Podcasts about necrotizing enterocolitis

Join Ben and Rahul for their in-depth discussion of Ben's recent three-week jury trial in which Ben represented a little girl who developed cerebral palsy following the development of necrotizing enterocolitis in the NICU.  Ben discusses how decision-making guided by big data led to him and his client to turning down an $11 million offer after closing arguments to take a verdict.  He discusses what he learned following extensive discussions with jurors following the trial. Ben describes how this verdict influences his thinking about data, risk and approach to trial moving forward.About Ben Gideonhttps://gideonasen.com/our-team/benjamin-gideon/Ben grew up in Portland, Maine, attended public schools and graduated from Deering High School in 1989. Ben's father, Martin Rogoff, was a prominent member of the Maine Law School faculty, so Ben grew up immersed in discussions of the law. Ben began to develop his legal skills early in life through nightly arguments with his father at the dinner table.In high school, Ben played varsity soccer and was the captain of the hockey team. Following high school, Ben attended Cornell University in Ithaca, NY. Ben attempted to walk on to the Cornell hockey team, but was eventually cut from the team, ending his hockey career. Depressed and disappointed at this failure, Ben became a poor student, failed several classes, and was told he was being suspended from college on academic probation.After rehabilitating himself through some community college courses, Ben was able to gain re-admission to Cornell and to complete his degree. Ben applied to law school and was admitted to Boston University School of Law. There, Ben was a standout student. His grades were so exceptional after his first year that he was accepted as a transfer student to Yale Law School where he earned his law degree.Ben began his career in private practice at a large, multi-national law firm, Latham & Watkins, in New York City. He practiced there for several years before deciding to return to Maine to join Berman & Simmons, PA, Maine's largest plaintiff's law firm.EDUCATIONCornell University, 1993Yale Law School, 1999RECOGNITIONSThe Inner Circle of Advocates, 100 of the Best Plaintiff Lawyers in the U.S., 2019-presentAmerican College of Trial Lawyers, Fellow, 2020-present, Top 1% of all lawyersAmerica's Top 100 Attorneys ― Listed in Maine for Personal Injury, Medical Malpractice, and Products Liability, 2017The Best Lawyers in America ― 2013–present; “Lawyer of the Year,” 2016–presentSuper Lawyers ― “Super Lawyer,” 2013–presentMartindale-Hubbell ― Top Rated “AV Preeminent”Chambers & Partners USA ― Listed for Litigation: Medical Malpractice & Insurance and Mainly PlaintiffBenchmark Litigation ― “Litigation Star”AVVO — Rated 10.0 out of 10MEMBERSHIPSMaine Board of Overseers of the Bar, Professional Ethics CommissionMaine State Bar AssociationAmerican Association for Justice (AAJ)American Bar AssociationGovernor, Maine Trial Lawyers AssociationADMISSIONSMaine (2003)U.S. District Court, District of Maine (2010)Vermont (2016)New Hampshire (2010)U.S. District Court, Southern District of New York (2002)New York (2000) A Leader at Berman & SimmonsDuring his years at Berman & Simmons, Ben rose from an associate to become an owner and practice leader at the firm. Ben was instrumental in helping the firm re-invent its approach to litigating and trying cases; expanded its areas of practice expertise; and recruited and trained many talented lawyers.During his 17 years at Berman & Simmons, Ben enjoyed many great successes and some disappointing failures, but overall managed to build the most successful plaintiff's personal injury and medical malpractice practice in the State of Maine. Ben achieved success in a broad range of different types of plaintiff's cases—police civil rights, product liability, medical malpractice, nursing home, maritime and industrial accidents.Early in his career, Ben achieved a landmark civil rights verdict against a police officer for violating his client's civil rights with a Taser shooting. The verdict was affirmed on appeal to the United States Court of Appeals for the First Circuit.In 2014, after 4 ½ year of litigation, Ben achieved a record-setting $22.5 million jury verdict in Burlington, Vermont, on behalf of a utility lineman who lost both of his legs during a high-voltage powerline switching operation.Ben followed his Vermont verdict with a verdict of $1.75 million jury verdict in a medical malpractice trial in Bangor, Maine.More recently, Ben recovered $2.5 million in a medical malpractice case tried to a jury in New Hampshire.Over the past decade, no other plaintiff's lawyer in Maine can match Ben's level of success on behalf of his clients, which include:Recovering more than $130 million in verdicts and settlementsAchieving 31 verdicts or settlements in excess of $ 1 millionRecovering more than $50 million for the victims of medical malpracticeRecovering tens of millions of dollars for victims of car and trucking accidents.Recovering more than $11 million in actions against major automobile manufacturers, including Toyota, Hyundai, and Fiat ChryslerRecovering more than $15 million from power and electrical utility companiesRecovering millions of dollars for families of the victims of the El Faro maritime disasterRecovering more than $5 million from 3 trials and several settlements of medical malpractice and personal injury against the U.S. GovernmentRecovering millions of dollars for victims of nursing home negligence and abuseRecovering millions of dollars for victims of dangerous and defective productsPeer RecognitionBen's accomplishments, professionalism and character have won him the recognition of his peers. Ben has been named in Best Lawyers in America every year since 2013 and was named “Lawyer of the Year” for the State of Maine twice. Ben has been listed in Super Lawyers every year since 2013. He has received the top rating of “AV Preeminent” from Martindale-Hubbell and has a 10.0 out 10 rating on AVVO.In 2019, Ben became only the second lawyer in Maine to be inducted into the Inner Circle of Advocates, an invitation-only group of the best 100 plaintiff lawyers in the United States.Here is how the Inner Circle describes its criteria for membership:Membership CriteriaMembership in The Inner Circle of Advocates is by invitation and based on criteria that include an applicant's performance and success in the courtroom. The Inner Circle carefully evaluates experience, reputation, judicial references, and peer evaluations to identify the best 100 trial lawyers in the country. Typically, applicants are expected to have at least three verdicts of one million dollars or a recent verdict in excess of ten million dollars to be considered for membership. The Inner Circle looks for cutting edge lawyers in their jurisdiction who are active courtroom lawyers with a willingness to learn and teach about our craft and to be part of a close-knit, sharing group of professional colleagues. Membership in The Inner Circle of Advocates is not just an accolade, it is a commitment to participate in a unique laboratory of professional advancement.In 2020, Ben was inducted as a Fellow in the American College of Trial Lawyers (ACTL), an invitation-only group limited to the top 1% of lawyers. Here is how ACTL describes the qualifications required for membership:Membership in the College cannot exceed one percent of the total lawyer population of any state or province.Founding Gideon Asen LLCAfter 17 years at Berman & Simmons, in November 2020, Ben decided to leave one firm he loved and had helped to build, to form a new law firm, Gideon Asen LLC.“I was very proud of everything we accomplished at Berman & Simmons,” Ben said, “but I was excited by the challenge of building a new firm that could be even better.”Ben's first step was to recruit Taylor Asen to join him.“Taylor and I have a common mission,” Ben said. “Although we're separated by 12 years, Taylor also attended Yale Law School and completed prestigious Federal clerkships. He's insanely smart.”“But perhaps more important, Taylor and I share a common vision of a plaintiff's law firm where clients have access to exceptional lawyers and service. We are both supremely competitive and don't tolerate mediocrity. We believe we owe it to our clients to give them the very best, and that is what Gideon Asen will provide.”Podcast, Writing and TeachingBen enjoys thinking about the practice of trial law and strategies for success and is a frequent writer and speaker on trial topics.Ben co-hosts a podcast called Elawvate! which focuses on the human factors and guiding principles that drive successful lawyers and law firms.Personal Life and InterestsBen lives in Freeport, Maine, with his wife, Sara Gideon, and three children, Julian, Aleksandr, and Anna Josephine. Sara is a former two-term Speaker of the Maine House of Representatives and was the 2020 Democratic Nominee for U.S. Senate in Maine. When Ben is not practicing law, he enjoys skiing at Sugarloaf, fishing in Casco Bay, hiking, canoeing, traveling and just spending time with his family.

Este podcast está presentado por los médicos neonatólogos Dani de Luis Rosell, Elena Itriago, Carolina Michel y Juliana Castellanos;  su anfitriona Maria Flores Cordova, médico residente de pediatría. No dudes en enviarnos preguntas, comentarios o sugerencias a nuestro correo electrónico: nicupodcast@gmail.comLos artículos que se tratan en el episodio de hoy están listados aquí: van den Akker CHP, Embleton ND, Lapillonne A, et al. Reevaluating the FDA's warning against the use of probiotics in preterm neonates: A societal statement by ESPGHAN and EFCNI. J Pediatr Gastroenterol Nutr. 2024;78(6):1403-1408. doi:10.1002/jpn3.12204Li, J., Zhou, J., Weng, J. et al. Rapidly progressive necrotizing enterocolitis: Risk factors and a predictive model. Pediatr Res (2024). https://doi.org/10.1038/s41390-024-03482-zSalas AA, Gunn E, Carlo WA, et al. Timing of Red Blood Cell Transfusions and Occurrence of Necrotizing Enterocolitis: A Secondary Analysis of a Randomized Clinical Trial. JAMA Netw Open. 2024;7(5):e249643. Published 2024 May 1. doi:10.1001/jamanetworkopen.2024.9643Harris L, Lewis S, Vardaman S. Exclusive Human Milk Diets and the Reduction of Necrotizing Enterocolitis. Adv Neonatal Care. 2024;24(5):400-407. doi:10.1097/ANC.0000000000001183 Bienvenidos a La Incubadora: una conversación sobre neonatología y medicina basada en evidencia. Nuestros episodios ofrecen la dosis ideal (en mg/kg) de los más recientes avances para el neonato y para las increíbles personas que forman parte de la medicina neonatal. Soy tu host, Maria Flores Cordova, MD. Este podcast está presentado por los médicos neonatólogos Dani de Luis Rosell, Elena Itriago, Carolina Michel y Juliana Castellanos. Creado originalmente por Ben Courchia MD y Daphna Yasova Barbeau MD http://www.the-incubator.org

In this episode Eric C. Eichenwald, MD, FAAP, chair of the AAP Committee on Fetus and Newborn, explains the pathophysiology of necrotizing enterocolitis (NEC) and the best ways to prevent it. Hosts David Hill, MD, FAAP, and Joanna Parga-Belinkie, MD, FAAP, also speak with Emily Waterman, PhD, and Mona Herrington about research into adverse childhood experiences (ACEs) in indigenous communities. For resources go to aap.org/podcast.

Join Ben and Rahul for their discussion with Jake and Tor, breaking down the recent 495 million Dollar verdict in a product liability case against Abbott Laboratories for pre-term infant formula that increases the risks for developing necrotizing enterocolitis. Hear how Jake and Tor navigated this difficult case and won this epic battle. About Jacob Plattenbergerhttps://www.torhoermanlaw.com/team/jake-plattenberger/Jacob Plattenberger has taken hundreds of depositions, argued in countless hearings, and tried over 35 cases to a jury.His experience in and out of the courtroom has made him a passionate advocate for those injured due to the negligence of others.Jake started his career trying cases at one of the busiest civil courthouses in the country – the Richard J. Daley Center in downtown Chicago.He started out doing insurance defense because he knew that afforded him the best opportunity to get courtroom experience.“When I was working on the defense side, I always knew that I was going to be a plaintiff's lawyer. I knew that being able and willing to try a case to a jury was a skill that I needed to have if I was going to be able to offer my clients the best legal representation. Insurance companies and corporate defendants need to believe you when you say you will take them to trial – they need to fear that.”This type of real trial experience is exceedingly rare in complex civil litigation and having seen it from the defense side gives Jake an added advantage.At TorHoerman Law, Jake manages our Chicago office where he leads trial teams in nationwide, complex litigations such as:Representing dozens of workers across the United States who were exposed to Diacetyl at work and now suffer lung diseaseeg. The Juul/E-cigarette LitigationThe Incretin Mimetics Products Liability Litigation, currently pending in the Southern District of California, where he was named to the Plaintiff's Steering CommitteeVarious Transvaginal Mesh multidistrict litigations that are currently pendingJake also maintains a personal injury practice in Chicago, representing people and their families who have been victims of catastrophic auto and truck accidents, products liability, maritime accidents, premises liability, and medical negligence.Jake believes that to successfully represent his clients, it is absolutely necessary to get personally involved.Jake's quote below perfectly reflects that belief! Notable Cases & ResultsIncretin Mimetics – Products Liability Litigation, MDL Case No. 13MD2452 AJB (MDD). Appointed to the Plaintiff's Steering Committee by Judge Battaglia in the MDL. The case is pending.JUUL E-Cigarettes – Products Liability Litigation, JCCP No. 5052. Appointed to the Plaintiff's Steering Committee by Judge Anne Jones in the JCCP. The case is pending.Diacetyl – Leads the Diacetyl litigation for TorHoerman Law. Previous settlements and verdicts have exceeded $5,000,000.00 to date. Litigation is currently ongoing.Actos Related Cases, MDL Case No. 11 L 10011, Et. Al. – Actively participated in managing the case for TorHoerman Law which resulted in a $2.4 billion settlement.Gadolinium-based Contrast Agents Litigation Case No. 279 and Products Liability Litigation MDL No. 1909 – Managed the cases for TorHoerman Law which resulted in a large, confidential settlement.Bus Accident – Handled a bus accident injury case in which an individual was thrown from a seat. Resulted in a $850,000.00 settlement.Auto Accident – Handled an auto accident injury case that resulted in a $650,000.00 settlement.Slip and Fall – Handled a slip and fall accident that occurred on a sightseeing boat in Chicago. Resulted in a $490,000.00 settlement. Personal LifeJake was born and raised in Chicago.He now lives in the Chicago suburbs, where his two young sons keep him busy.When he isn't working, Jake is a lifelong Bears and Cubs fan and loves participating in the (mostly) healthy rivalry between the Cubs and Cardinals fans at TorHoerman Law.   About Tor Hoermanhttps://www.torhoermanlaw.com/team/tor-hoerman/Tor Hoerman is a nationally recognized attorney who has served in the field for more than 25 years.He is most well-known as the founder of the personal injury law firm TorHoerman Law, LLC (THL). Early Life & EducationTor was born the youngest of four boys on July 16, 1969, in Bethesda, Maryland to Kirk and Greta Hoerman.With his father serving as a Captain in the Navy, Tor often moved towns during his childhood, eventually landing in the Chicago metropolitan area.In Chicago, Tor lived in the Great Lakes Naval Base and Lake Bluff before his family settled in Lake Forest, which is where he attended high school.Despite repeatedly switching homes, Tor made the most of his situation.In high school, he played football, basketball, and baseball, and he earned varsity letters in each of these sports.In addition to varsity recognition, he was recognized as an All-county athlete and awarded the Booster Club Athlete of the Year his senior year.Outside of sports, Tor coached little league baseball, served as a summer camp counselor, and worked as a summertime janitor at his former high school after graduating.Tor attended Depauw University and majored in Political Science.He played NCAA baseball and football at Depauw, and he was the captain of the baseball team.After graduating from Depauw in 1991, Tor enrolled in the Chicago-Kent College of Law.During law school, Tor bartended at a local bar and clerked for Kravolec, Jambois & Schwartz, LLC. Legal CareerAfter graduating from law school in 1995, Tor took on a job doing insurance defense at Bolero, Cart & Stone, LLC, where he worked reluctantly for a year and a half.One day at work, Tor received a phone call from Steve Jambois, his former employer throughout law school, asking if he wanted a job on the plaintiff's side of insurance law.Tor immediately accepted the job, kickstarting decades to come of fighting corporations on behalf of harmed individuals.Tor's Transition to Medical Malpractice LitigationTor returned to Kravolec, Jambois & Schwartz to fight on behalf of medical malpractice victims, which mostly consisted of high-intensity trial work in the Chicago courthouse.After seven years at the Jambois firm, Hoeman was recruited by the Simmons law firm, based in an Illinois suburb of St. Louis, to start and lead a branch of the practice that focused on pharmaceutical litigation.Leading the Pharmaceutical Practice at Simmons Law FirmTor became a partner of what is now Simmons, Hanly, and Conroy and led the pharmaceutical practice for seven years.One of Tor most notable achievements while leading the practice was his work against Purdue Pharma and its reckless distribution of OxyContin.Tor was the first to file a case alleging Purdue Pharma's wrongdoing in distributing OxyContin and failing to adequately warn healthcare providers and the public of the risks of addiction.Achieving Justice Against Purdue PharmaHe led the litigation process and got Purdue Pharma to agree to a large settlement, which was distributed to thousands of accidental addicts.Tor took a step further to achieve justice in this case, assisting the Department of Justice in obtaining guilty pleas by Purdue Pharma representatives who had a direct role in contributing to the opioid epidemic. Founding TorHoerman LawHaving garnered success leading the pharmaceutical branch at the Simmons firm, Tor amicably decided to split from Simmons in 2009 and start his own pharmaceutical and personal injury practice called TorHoerman Law, LLC (THL).After negotiating the terms of the split, Tor struck a deal that allowed him to bring his entire staff from Simmons to his new practice, which summed up to more than 25 lawyers and staff members.Expansion and Success of THLTor opened offices in Edwardsville, IL; Clayton, MO; and Chicago, IL to kickstart operations; all three offices remain open today.In the time since opening THL, Tor and his team have litigated many pharmaceutical malpractice and personal injury cases.Notable Successes at THLTor's most notable successes while operating THL are perhaps co-leading the litigations against Boehringer Ingelheim's Pradaxa and Takeda's Actos.Through intense research and vetting, Tor was able to find substantial evidence indicating Actos causes bladder cancer and Pradaxa causes internal bleeding.He then presented the evidence to the companies, which decided to settle the cases.Tor played a significant role in negotiating these settlements, which ended up being $650 million for Pradaxa and $2.4 billion for Actos.Tor has also had major success in several other product liability lawsuits, such as Zelnorm, Gadolinium-based Contrast Agents, and Incretin Mimetics.We've outlined these cases, a few other notable cases, and their correlating results in the section below.Recognition & AwardsHis successes with these cases and beyond earned him the distinction as a Top 25 Notable Alumni from the Chicago-Kent School of Law, which was awarded to him and 24 other lawyers out of the tens of thousands who have graduated from the school since its founding in 1888.Tor is also recognized as a Top 100 National Trial Lawyer by the National Trial Lawyers Organization. Notable Cases & ResultsPradaxa (Dabigatran Etexilate) – Products Liability Litigation, MDL 2385 – Appointed by Judge Herndon as national lead counsel in the MDL. After protracted litigation successfully negotiated a $650 million settlement.Actos Related Cases, MDL Case No. 11 L 10011, Et. Al. – Appointed by Judge Dooling as lead counsel in Cook County consolidated docket (over 4400 cases). After protracted litigation, he was one of four lead negotiators (along with Pete Flowers, Mark Lanier, and Andy Birchfield) on a $2.4 billion settlement.Incretin Mimetics Products Liability Litigation, MDL Case No. 13MD2452 AJB (MDD) – Appointed as lead counsel by Judge Battaglia in the MDL. The case is pending.OxyContin – Represented thousands of “accidental addicts”. After protracted litigation, he negotiated a large settlement and assisted the DOJ in obtaining guilty pleas by corporate representatives.Zelnorm Litigation., Case No. 280 – Appointed lead counsel in NJ state court consolidation, took the major depositions and negotiated a confidential settlement.Gadolinium-based Contrast Agents Litigation Case No. 279 and Products Liability Litigation MDL No. 1909 – Appointed by Judge Polster as both the state and federal liaison and lead counsel in the Cook County consolidated docket. He negotiated large, confidential, individual settlements. Involvement in the Legal CommunityIn addition to his litigation work, Tor is on the Board of Managers of the Illinois Trial Lawyer Association and an Executive Board Member of the Mass Torts Trial Lawyer Association.He also attends national legal conferences on a yearly basis. Personal LifePersonally, Tor is the proud father of Casey, Kirsten and Quinn, and husband of Jessica.He tries to stay active, including still playing baseball.

When babies, especially those in the NICU, can't breastfeed directly from their mothers, breast milk remains essential for their nutrition and immune support. This is where milk banks step in. Discover the process by which milk banks collect, screen, process, and distribute human breast milk to babies in need, especially premature infants or those facing medical challenges. Series: "Motherhood Channel" [Health and Medicine] [Show ID: 39327]

When babies, especially those in the NICU, can't breastfeed directly from their mothers, breast milk remains essential for their nutrition and immune support. This is where milk banks step in. Discover the process by which milk banks collect, screen, process, and distribute human breast milk to babies in need, especially premature infants or those facing medical challenges. Series: "Motherhood Channel" [Health and Medicine] [Show ID: 39327]

When babies, especially those in the NICU, can't breastfeed directly from their mothers, breast milk remains essential for their nutrition and immune support. This is where milk banks step in. Discover the process by which milk banks collect, screen, process, and distribute human breast milk to babies in need, especially premature infants or those facing medical challenges. Series: "Motherhood Channel" [Health and Medicine] [Show ID: 39327]

When babies, especially those in the NICU, can't breastfeed directly from their mothers, breast milk remains essential for their nutrition and immune support. This is where milk banks step in. Discover the process by which milk banks collect, screen, process, and distribute human breast milk to babies in need, especially premature infants or those facing medical challenges. Series: "Motherhood Channel" [Health and Medicine] [Show ID: 39327]

When babies, especially those in the NICU, can't breastfeed directly from their mothers, breast milk remains essential for their nutrition and immune support. This is where milk banks step in. Discover the process by which milk banks collect, screen, process, and distribute human breast milk to babies in need, especially premature infants or those facing medical challenges. Series: "Motherhood Channel" [Health and Medicine] [Show ID: 39327]

Join us on this episode of the Birth Journeys as Jamie shares her story through PCOS, unexpected pregnancy, miscarriage and finally her first pregnancy and birth that didn't go as planned and left some birth trauma. This episode covers PCOS, miscarriage, gestational diabetes, premature rupture of membranes, induction, hospital birth, NICU stay, Necrotizing Enterocolitis diagnosis, and anxiety.

Dr. Tim Hand, a March of Dimes researcher at the University of Pittsburgh, discusses the link between breast milk and a life-threatening preterm birth-related condition called necrotizing enterocolitis (NEC). As it turns out, not all breast milk is protective against NEC.

In this episode of Child Life On Call, we are honored to host Jennifer Canvasser, the driving force behind the NEC Society, as she shares her poignant journey and advocacy for Necrotizing Enterocolitis (NEC) awareness in the NICU. Join us as Jennifer unveils her personal story and how she transformed her loss into a powerful force for supporting families grappling with NEC. Gain valuable insights into the pivotal role of human milk and early intervention in mitigating the risk of NEC, and the vital need for open communication between healthcare providers and families in the NICU. Jennifer also sheds light on the indispensable contribution of Child Life specialists and palliative care teams, along with the plethora of resources available on the NEC Society's website. Additionally, Jennifer delves into her touching book, "Forever Our Little One," a heartfelt guide for parents navigating the complexities of grief. Tune in to this impactful episode and be inspired by Jennifer's unwavering commitment to enhancing NEC awareness and providing unwavering support for families in the NICU. In this episode, you will be able to: Discover how NEC Society supports and raises awareness for families. Learn the importance of human milk in reducing NEC risk. Explore the significance of early intervention and communication in the NICU. Understand the vital role of Child Life specialists in the NICU. Find valuable resources for families dealing with NEC in the NICU. More about Jennifer Jennifer Canvasser is the Executive Director and founder of the NEC Society. With firsthand experience as a mother who lost her son to Necrotizing Enterocolitis (NEC), Jennifer's expertise and advocacy work in the field of NEC is invaluable. Her dedication to raising awareness and driving change is evident through her establishment of the NEC Society, which brings together researchers, scientists, and families affected by NEC. Jennifer's personal journey in the NICU has propelled her to create a platform that fosters collaboration and provides support for families facing the challenges of NEC. Her work aims to empower parents and improve outcomes for premature babies at risk of NEC. We are privileged to have Jennifer as a guest on this episode, as she shares her knowledge and personal insights to shed light on the importance of NEC advocacy.   Connect with Jennifer  Website X (twitter)   The key moments in this episode are: 00:00:00 - Introduction 00:04:05 - Jennifer's NICU Experience 00:06:55 - Loss of Micah 00:08:58 - Memories of Micah 00:12:25 - Coping in the NICU 00:15:38 - The Urgency of the NICU Society's Work 00:16:15 - The Importance of Human Milk in NEC Prevention 00:17:41 - Starting Conversations with At-Risk Families 00:18:56 - The Power of Information and Early Intervention     Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. Parents, download our free parent starter kit. When you download our starter kit, you'll learn how to: Give medicine to your child without it becoming a wrestling match Prepare your child (and yourself) for a shot so they can feel less anxious Create and use a coping plan for any medical appointment or procedure The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing. Child life specialists, get affordable PDUs on-demand here. Shop for your CLOC gear here.

Judy Jarka is a first-time momma of twin girls who arrived early at 26 weeks weighing less than two pounds each. Today we'll be discussing her pregnancy journey up until that point, the experience of early delivery with twins, and how hope is what got her family through their journey of dealing with Infant Necrotizing Enterocolitis.Subscribe to the Twiniversity Email Newsletter! Expecting twins? Twiniversity has you COVERED with online classes on:Breastfeeding TwinsTwins After SingletonsBaby Safety (CPR, First Aid, Car Seat Safety, Childproofing)Click here to sign up for a class!Follow us on:YouTubeTwitterInstagramPinterestFacebook

Get ready to unravel the enigmatic world of necrotizing enterocolitis with leading pediatrician and director of clinical and translational research on neonatal perinatal medicine, Dr Hala Chaaban. We delve into the intricacies of this condition and discuss why fully understanding it is a continuing challenge. The conversation takes a fascinating turn as we examine the role of donor milk and the ways to maximize its use to prevent this condition, presenting a potential new avenue in neonatal care.Switching gears, our journey with Dr Shaban takes us from Lebanon to Oklahoma, painting a vivid picture of her journey in medical research. Open and honest communication lies at the heart of medical care, and we delve into its vital role in patient interactions. Lastly, we touch upon Dr Chaaban's commitment to scientific research through the NEC Society's Scientific Advisory Council.  As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below. Enjoy!

Ever imagined a world without the devastating disease, Necrotizing Enterocolitis? Dr. Gail Bestner, a chief of pediatric surgery at Nationwide Children's Hospital, passionately shares her innovative therapeutic strategies that could make this a reality. Join us for an enlightening conversation as we explore the use of probiotics in neonatology, the challenges of implementing probiotic therapy in a neonatal intensive care unit, and how the right approaches could steer us towards a world free from Necrotizing Enterocolitis. We throw the spotlight on a groundbreaking strategy for administering probiotics in their biofilm state, a significant detour from current practices. The exciting discussion takes us through the benefits of lactobacillus ruteri, the ingenious technique of loading microspheres with prebiotic substances, and the inspiring inception story of this research project. We move beyond the realm of Necrotizing Enterocolitis to delve into Dr. Bestner's notable work on autism treatment, discussing the importance of the gut-brain axis and the use of a pig model in her pioneering research.As we traverse the multifaceted world of clinical research, we touch upon the entrepreneurial side of drug development and the crucial role of NIH grants. We also discuss the importance of a multidisciplinary approach in caring for babies affected by Necrotizing Enterocolitis, emphasizing early detection and the potential of biomarkers. Dr. Bestner's compelling advice for aspiring clinicians and researchers, along with her passionate advocacy for Necrotizing Enterocolitis, wraps up this captivating episode that is a perfect blend of science, passion, and hope for a healthier future. Tune in and get inspired! As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below. Enjoy!

While any illness in a premature baby must be taken very seriously, Necrotizing Enterocolitis (NEC) demands special and rapid attention. Crystal Crawford, a highly experienced nurse, LNC, and expert witness, shares her experience in neonatal intensive care, particularly her deep knowledge of care for premature babies. NEC, a gastrointestinal disorder often associated with blood transfusions and donor milk, has symptoms that can be confused with other illnesses that premature babies acquire. For this reason, any sign of distress must be monitored closely. Crystal emphasizes that the nurse and doctor don't have days and days to observe the symptoms, which rapidly intensify. For the same reason, she strongly advocates persistence in getting help for an infant in distress. Neonate nurses face the same challenges of all nurses in getting doctors to listen to them. She urges that a nurse go up the chain of command until a positive response is achieved. Crystal provides valuable and detailed information to indicate what an LNC should look for in medical history: testing, speed of response, and other vital factors. You will find this podcast to be an essential addition to your collection. Learn more about Necrotizing Enterocolitis Risks Crystal Crawford What is Necrotizing Enterocolitis (NEC)? Why is it important to make a fine distinction between NEC and illnesses with similar symptoms that premature babies get? What diagnostic tests would an LNC expect to see in such a case? Why is intuition so vital in diagnosis? What is the treatment for NEC? Listen to our podcasts or watch them using our app, Expert.edu, available at legalnursebusiness.com/expertedu. https://youtu.be/WeCyXX9mhkk Announcing LNC Success™ Virtual Conference 8 October 26,27 & 28 LNC Success™ is a Virtual Conference 3-day event designed for legal nurse consultants just like you! Pat Iyer and Barbara Levin put together THE first Legal Nurse Consulting Virtual Conference in July 2020. They are back with their 8th all-new conference based on what attendees said they'd find most valuable. This new implementation and networking event is designed for LNCs at any stage in their career. Build your expertise, attract higher-paying attorney clients, and take your business to the next level. After the LNC Success™ Virtual Conference, you will leave with clarity, confidence, and an effective step-by-step action plan that you can immediately implement in your business. Your Presenter of Necrotizing Enterocolitis Risks Crystal Crawford Crystal is a dedicated Registered Nurses with over 20 years of experience in Labor & Delivery, High-Risk Antepartum and the NICU as well as a nurse expert and legal nurse consultant. She holds certifications in electronic fetal monitoring and Low Risk neonatal nursing and is an instructor for the Neonatal Resuscitation Program. Crystal holds a BSN from Kent State University in Kent, Ohio. She is currently still active at the bedside. Connect with Crystal www.crawfordlegalnurseconsulting.com

In this episode, we review the high-yield topic of Necrotizing Enterocolitis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠from the Gastrointestinal section. Follow ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Medbullets⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets --- Send in a voice message: https://podcasters.spotify.com/pod/show/medbulletsstep1/message

NEC is a horrible and poorly understood disease. “The Why's “ behind it are hard for any medical professional to understand. We are still studying NEC and we need a lot more research. What is it? What happens? How can a therapist support a child and family? What does treatment look like? In NICU and at home? Learning about NEC made me a much better therapist and I have just scratched the surface of all there is to learn. We all have. The gut is a mystery and a vital core to our health. --- Send in a voice message: https://podcasters.spotify.com/pod/show/cheri-fraker/message

In this episode, we review the high-yield topic of ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Necrotizing Enterocolitis⁠ from the Pediatrics section. Follow ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Medbullets⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets

Necrotizing enterocolitis, or NEC, is a life-threatening illness with a mortality rate as high as 50% that almost exclusively affects neonates. The complex pathophysiology of NEC is based on an immature intestinal system that makes babies more susceptible to injury once they are fed. Ultimately, this can result in a breakdown of the gut, necrosis and then sepsis and death. There's still no known cure for NEC, but we will discuss the potential of probiotics, specifically lactobacillus reuteri, with our guest Gail Besner, MD. As part of our Women in Medicine series, we are pleased to talk to Dr. Besner, whose research at Nationwide Children's Hospital focuses on identifying novel therapeutic strategies to protect the intestines from intestinal injury, including necrotizing enterocolitis.   Guest:  Gail Besner, MD, is a surgeon-scientist at Nationwide Children's Hospital and The Ohio State University, holds the H. William Clatworthy, Jr. Chair in Surgery, and has been the Chief of Pediatric Surgery at Nationwide Children's Hospital for the past eleven years. She is a member of the Center for Perinatal Research at the Research Institute at Nationwide Children's Hospital. She was the Program Director of the Pediatric Surgery Residency Training Program for many years, and now serves as the Associate Program Director.  She's also a scientific Co-Founder of Scioto Biosciences, Inc., a company designed to bring scientific findings from the laboratory to the bedside.     For more information on Children's Hospital Colorado, visit: childrenscolorado.org  

For the 49th episode on the Empowering NICU Parents' Podcast, we review necrotizing enterocolitis (NEC) which is a life-threatening newborn condition that involves ischemia and inflammation of the bowel. Necrotizing Enterocolitis is a complex disease that despite decades of research, is still not well understood. The evidence continues to support the concurrent presence of several factors that when combined with a trigger, may lead to a disruption of the normal intestinal bacterial flora followed by an altered inflammatory host response. On this episode, you will learn what factors place infants, especially premature infants, at an increased risk to develop NEC. The common clinical symptoms that infants present with once they develop NEC will be reviewed as well as when they are most likely to occur. Additionally, we touch on some of the subtle behavioral changes infants may display at the onset of the disease that are often most obvious to the parents. Next, the diagnostic tests and labs that are typically done once NEC is suspected will be reviewed followed by a description of the Bell staging system which is used to provide a more uniform clinical definition for NEC. The typical management for NEC will also be discussed, followed by a review of some of the common preventative measures that have been put into place in NICUs today to continue to decrease the incidence of NEC. We close out the episode discussing what the prognosis and mortality rate is for infants who have been diagnosed with NEC. The episode is a great overall review of NEC that will be beneficial for NICU parents and clinicians. Start listening now and get ready to be empowered! Our NICU Roadmap: A Comprehensive NICU Journal: https://empoweringnicuparents.com/nicujournal/NICU Mama Hats: https://empoweringnicuparents.com/hats/NICU Milestone Cards: https://empoweringnicuparents.com/nicuproducts/Newborn Holiday Cards: https://empoweringnicuparents.com/shop/Empowering NICU Parents Show Notes: https://empoweringnicuparents.com/shownotes/Episode 49 Show Notes: https://empoweringnicuparents.com/episode49Empowering NICU Parents Instagram: https://www.instagram.com/empoweringnicuparents/Empowering NICU Parents FB Group: https://www.facebook.com/groups/empoweringnicuparentsPinterest Page: https://pin.it/36MJjmH

Today's Episode Dr. Jasmine Massoumi reviews case 54 from Pediatrics Morning Report. A male infant born at 29 weeks with a birth weight of 1450g is now 20 days old in the neonatal intensive care unit (NICU). Today's Host Dr. Jasmine Massoumi is a Pediatrics Resident at LAC-USC Medical Center. About Dr. Raj Dr Raj is a quadruple board certified physician and associate professor at the University of Southern California. He was a co-host on the TNT series Chasing the Cure with Ann Curry, a regular on the TV Show The Doctors for the past 7 seasons and has a weekly medical segment on ABC news Los Angeles. More from Dr. Raj www.BeyondThePearls.net The Dr. Raj Podcast Dr. Raj on Twitter Dr. Raj on Instagram Want more board review content? Physiology by Physeo Step 1 Success Stories The InsideTheBoards Study Smarter Podcast The InsideTheBoards Podcast Study on the go for free! Download the Audio QBank by InsideTheBoards for free on iOS or Android. If you want to upgrade, you can save money on a premium subscription by customizing your plan until your test date on our website! Produced by Ars Longa Media To learn more about us and this podcast, visit arslonga.media. You can leave feedback or suggestions at arslonga.media/contact or by emailing info@arslonga.media. Produced by: Christopher Breitigan Executive Producer: Patrick C. Beeman, MD Learn more about your ad choices. Visit megaphone.fm/adchoices

With the terrible shortage of formula right now and many shopping around to find alternatives, please also make sure you're informed about necrotizing enterocolitis (NEC) in premature babies.   Certain brands of infant formula, including Similac and Enfamil, use cow's milk as their base. While premature and underweight infants might need supplemental formula, giving them these types of formula can cause them to develop necrotizing enterocolitis (NEC). The condition causes intestinal tissue to die. It can also cause a hole in the intestine. Bacteria can leak through this hole, causing serious abdominal infections. Some infants will need surgery to remove the damaged intestine, and to some, it could be fatal.   Join Attorneys/Law Partners Justin Lovely and Amy Lawrence today as we discuss what NEC is, what you should know, and how to contact us if you have questions.   Learn more about NEC in Premature Babies.

Today is #NECday so we went back to a conversation between Dr. Todd Ponsky and Dr. Gail Besner about necrotizing enterocolitis. Enjoy this Stay Current Throwback on NEC. https://pubmed.ncbi.nlm.nih.gov/34506326/

Welcome to PICU Doc On Call, A Podcast Dedicated to Current and Aspiring Intensivists. I'm Pradip Kamat. I'm Dr. Ali Towne, a rising 3rd-year pediatrics resident interested in a neonatology fellowship, and I'm Rahul Damania and we are coming to you from Children's Healthcare of Atlanta - Emory University School of Medicine. Welcome to our Episode a 5-month-old, ex-28 week female with abdominal distention. Here's the case: A 5-month-old, ex 28 week, female with a past medical history of severe BPD, pulmonary hypertension, home oxygen requirement, and G-tube dependence presents with hypoxemia and increased work of breathing. The patient has a history of prolonged NICU stay with 8 weeks of intubation. The patient developed worsening respiratory distress requiring increased support and eventual intubation for hypoxemic respiratory failure. Echo showed worsened pulmonary hypertension with severe systolic flattening of the ventricular septum and a markedly elevated TR jet. The patient had poor peripheral perfusion, and upon intubation was started on milrinone and epinephrine. The patient improved, but the patient then developed abdominal distention and increasing FiO2 requirements prompting an abdominal x-ray. X-ray showed diffuse pneumatosis with portal venous gas. The patient was made NPO and antibiotic therapy was initiated. To summarize key elements from this case, this patient has NEC. NEC is not a homogenous disease, but rather a collection of diseases with similar phenotypes. Some people split NEC into two categories: Cardiac NEC and Inflammatory NEC. Babies who develop cardiac NEC tend to be significantly older than babies who develop inflammatory NEC (about 1 month vs 2 weeks). There are three main contributory factors to the development of NEC: gut prematurity, abnormal bacterial colonization, and ischemia-reperfusion injury. Many cases result from an ischemic insult to the bowel, resulting in translocation of intra-luminal bacteria into the wall of the bowel, but the etiology and course of NEC can be very variable. This translocation can cause sepsis and death; the ischemia of the bowel can result in intestinal perforation and/or necrosis. Necrotizing enterocolitis (NEC) is one of the most common gastrointestinal emergencies in the newborn infant. It is estimated to occur in 1 to 3 per 1000 live births. More than 90 percent of cases occur in very low birth weight (VLBW) infants (BW

Keller Lenkner attorneys Seth Meyer & Amelia Frenkel discuss the most recent progress on Necrotizing Enterocolitis litigation against baby formula manufacturers.

In this episode, Drs. Lila Nolan and Misty Good will discuss the nitty gritty of necrotizing enterocolitis.

As always, feel free to send us questions, comments or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through instagram or twitter, @nicupodcast. Or contact Ben and Daphna directly via their twitter profiles: @drnicu and @doctordaphnamd. Papers discussed in today's episode are listed and timestamped below.enjoy!________________________________________________________________________________________04:10 - Qualitative indications for tracheostomy and chronic mechanical ventilation in patients with severe bronchopulmonary dysplasia. https://www.nature.com/articles/s41372-021-01165-915:40 - Association between Term Equivalent Brain MRI and 2 Year Outcomes in Extremely Preterm Infants: A Report from the PENUT Trial Cohort. https://jpeds.com/retrieve/pii/S002234762100825822:46 - Association of Blood Donor Sex and Age With Outcomes in Very Low-Birth-Weight Infants Receiving Blood Transfusion. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/278371529:30 - Slow advancement of enteral feed volumes to prevent necrotising enterocolitis in very low birth weight infants. https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001241.pub838:29 - Neurodevelopmental outcome of preterm infants enrolled in myo-inositol randomized controlled trial. https://www.nature.com/articles/s41372-021-01018-5.41:20 - Adverse Events and Associated Factors During Intra-hospital Transport of Newborn Infants. https://www.jpeds.com/article/S0022-3476(21)00859-3/fulltext46:17 - Digital tracheal intubation and finger palpation to confirm endotracheal tube tip position in neonates: A systematic review and meta‐analysis. https://onlinelibrary.wiley.com/doi/10.1002/ppul.2555152:41 - The DELUX study: development of lung volumes during extubation of preterm infants. https://www.nature.com/articles/s41390-021-01699-w

After listening to this episode, learners will be able to: Define necrotizing enterocolitis and understand its importance as one of the most common gastrointestinal emergencies Describe the pathophysiology and potential risk factors Identify common clinical features and physical exam findings Outline appropriate investigations and treatment options

TRIGGER WARNING I spoke with Lauren, who has our youngest baby so far at just 5 months old, Ellie. Ellie was diagnosed during Lauren's 20 week scan with: - Transposition of the Great Arteries (TGA) During Ellie's 12 weeks in hospital she suffered some significant set backs and this is a warning that this episode could be triggering for some listeners. I talk with Lauren about Ellie having an open chest after surgery, being told there was a 50/50 chance of one of the procedures working after Ellie went into a critical condition and the 'miracle baby' that she became. We talk about a range of medical conditions and treatments in this episode, and have provided explanations (from Dr Google) for each below: Necrotizing Enterocolitis - a serious gastrointestinal problem that mostly affects premature babies. The condition inflames intestinal tissue, causing it to die. Chylothorax - a rare condition in which lymphatic fluid leaks into the space between the lung and chest wall. When this fluid builds up in the lungs, it can cause a severe cough, chest pain and difficulty breathing. Chylothorax is a lymphatic flow disorder. ECMO - In Extracorporeal Membrane Oxygenation (ECMO), blood is pumped outside of the body to a heart-lung machine that removes carbon dioxide and sends oxygen filled blood back to tissues in the body. Stoma - a round or oval opening made during surgery through the tummy wall. It lets the bowel connect onto the surface of the tummy. Poo will no longer pass out of the rectum and anus in the usual way. Instead it will pass out of the stoma, into a disposable bag that is worn over the stoma. Links to charities discussed in the podcast: Tiny Tickers: https://www.tinytickers.org/ British Heart Foundation: www.bhf.org.uk

Contributor:  Peter Bakes, MD Educational Pearls: Necrotizing Enterocolitis (NEC) Presents in the first few days of life (often in the NICU) to 3 weeks old Risk factors include prematurity, excess feeding, neonatal sepsis Pneumatosis Intestinalisis on abdominal xray caused by bacterial translocation into the bowel wall Treated with NG tube, bowel rest and surgical resection Other causes of pediatric abdominal pain Malrotation with volvulus Malrotation is caused by failure of intestinal rotation in the 8th-12th week of development Presents with bilious vomiting, which is a surgical emergency in a neonate 90% of cases present in the first year of life, with most of these presenting in the first month Diagnosed with an upper GI series Pyloric Stenosis Typically in males

Today we'll be covering Necrotizing Enterocolitis (NEC), going along with this month's theme, Newborn Medicine. If you haven't listened to our podcast before, each week we have a case-based discussion about a medical topic to help you study for the pediatric medicine board exam. Episodes are released every weekend, and the case is then reviewed and reinforced on social media throughout the week.   Follow the podcast on social media: Facebook- @portablepeds (www.facebook.com/portablepeds) Twitter- @portablepeds (www.twitter.com/portablepeds)   We'd love to hear from you via email at portablepeds@gmail.com!   Also, feel free to visit our website, www.portablepeds.com, for more content.   Today's Case:   An infant was born weighing 1,250g at 30 weeks gestation due to premature rupture of membranes.  Pregnancy complications included maternal cocaine use and intrauterine growth restriction.  As feeds were introduced with donor breast milk, the infant appeared to have increased discomfort with feeds.  The baby went on to develop necrotizing enterocolitis, also known as NEC, at 20 days of life.  Which of the following is NOT a risk factor for the development of NEC?   Pre-term birth Very low birth weight (defined as < 1,500g) Intrauterine growth restriction Maternal cocaine use Feeding with donor breast milk   We would like to give an enormous thank you to Zack Goldmann for designing this podcast's logo and accompanying artwork. You can find more of his work at www.zackgoldmann.com.   The intro and outro of this podcast is a public domain song obtained from scottholmesmusic.com.   Intro/Outro- Hotshot by Scott Holmes   Disclaimer: This podcast is intended for healthcare professionals. The information presented is for general educational purposes only and should NOT be used as professional medical advice or for the diagnosis or treatment of medical conditions.   The views and opinions expressed do not represent the views and opinions of our employer or any affiliated institution. Expressed opinions are based on specific facts, under certain conditions, and subject to certain assumptions and should not be used or relied upon for any other purpose, including, but not limited to, the diagnosis or treatment of medical conditions or in any legal proceeding. Full terms and conditions can be found at portablepeds.com.   Thanks for listening! As always, please Rate and Review this podcast on Apple Podcasts, Facebook, or your favorite podcasting platform. Also, Subscribe to get all the latest episodes, and Share this episode with someone you think would enjoy it! Hope to see you real soon!

Sepsis is the most common cause of death for newborn babies worldwide. Mohan Pammi and Gautham Suresh from Baylor College of Medicine in Houston, USA updated the Cochrane review of the evidence on the use of lactoferrin, in March 2020, and we asked Mohan to describe the latest findings.

Sepsis is the most common cause of death for newborn babies worldwide. Mohan Pammi and Gautham Suresh from Baylor College of Medicine in Houston, USA updated the Cochrane review of the evidence on the use of lactoferrin, in March 2020, and we asked Mohan to describe the latest findings.

Sepsis is the most common cause of death for newborn babies worldwide. Mohan Pammi and Gautham Suresh from Baylor College of Medicine in Houston, USA updated the Cochrane review of the evidence on the use of lactoferrin, in March 2020, and we asked Mohan to describe the latest findings.

Rachael Buck, Ph.D., Research Fellow at Abbott discusses necrotizing enterocolitis (NEC) in premature babies and the pre-clinical study from Johns Hopkins and Abbott, that was published in "Pediatric Research" that showed for the first time that certain human milk oligosaccharides (HMOs) can prevent the development of NEC.

Advocating for patients, families, and fellow nurses is a vital part of the nursing role. Jill is joined by Jennifer Canvasser, founder and director of the NEC Society, to discuss advocacy and awareness both inside and outside the NICU. It is the hope of this NANNcast episode to inspire nurses everywhere to not only advocate for Necrotizing Enterocolitis (NEC) prevention and treatment, but for the general safety and health of the broader NICU community as well. Listen in to learn about the NEC Society and visit necsociety.org for more information. Join us in celebrating NEC Awareness Day on May 17.

In this birth story podcast interview, mom Jan tells how she developed eclampsia at 32 weeks pregnant with her daughter Alice and delivered her via emergency C-section. Because Alice was premature, she was diagnosed with necrotizing enterocolitis (NEC) and died 55 days later due to complications of NEC. #stillmychild Find the complete show notes and interview transcriptions at www.stillapartofus.com. Thanks to Josh Woodward for the use of his music. Find him at www.Joshwoodward.com.

In this birth story podcast interview, dad Scott tells how his wife Jan developed eclampsia at 32 weeks pregnant with their daughter Alice and delivered her via emergency C-section. Because Alice was premature, she was diagnosed with necrotizing enterocolitis (NEC) and died 55 days later due to complications of NEC. #stillmychild Find the complete show notes and interview transcriptions at www.stillapartofus.com. Thanks to Josh Woodward for the use of his music. Find him at www.Joshwoodward.com.

In this podcast, Editor-in-Chief Kelly A. Tappenden, PhD, RD, interviews Priscilla A. Barr, MS, RDN, on the article “A Standardized Nutrition Protocol for Very Low Birth Weight Infants Resulted in Less Use of Parenteral Nutrition and Associated Complications, Better Growth, and Lower Rates of Necrotizing Enterocolitis” published in the May 2019 issue of JPEN here: https://onlinelibrary.wiley.com/doi/full/10.1002/jpen.1453

This podcast covers necrotizing enterocolitis (NEC), including presentation, investigations, management, long term complications and primary prevention. This podcast was developed by Arun Dhir, a fourth year medical student at the University of British Columbia and Dr. Mandeep Mahal of the UBC Faculty of Medicine, Department of Pediatrics.

This paper is part of NMJ's 2018 Microbiome Special Issue. Download the full issue here. In this interview, naturopathic physician and probiotic expert Donald Brown, ND, discusses the role of probiotics in supporting the gut microbiome. Brown also describes the mechanisms of action and clinical applications of probiotics, as well as strains, dosages and potential contraindications. About the Expert Donald J. Brown, ND, is one of the leading authorities in the USA on the safety and efficacy of dietary supplements, evidence-based herbal medicine, and probiotics. Brown currently serves as the director of Natural Product Research Consultants (NPRC) in Seattle. He is a member of the Advisory Board of the American Botanical Council (ABC) and the Editorial Board of The Integrative Medicine Alert. He was a member of the Board of Directors for the International Probiotics Association (2008-2010) and its Scientific Advisory Board (2006-2008). He has also previously served as an advisor to the Office of Dietary Supplements at the National Institutes of Health. Brown is the author of Herbal Prescriptions for Health and Healing (Lotus Press, 2002) and was a contributor to The Natural Pharmacy (Prima Publishing, 2006), the A-Z Guide to Drug-Herb-Vitamin Interactions (Prima Publishing, 2006), and The Textbook of Natural Medicine (Churchill Livingstone, 2006). About the Sponsor Founded in 1979 by molecular geneticist Stephen Levine, PhD, Allergy Research Group® is one of the very first truly hypoallergenic nutritional supplement companies. For nearly 40 years Allergy Research Group® has been a leading innovator and educator in the natural products industry. Our dedication to the latest research about cutting-edge nutritional supplements continues to this day. Our purpose is to provide customers with products they can use to improve their patients’ quality of life, through scientific based innovation, purity of ingredients, education and outstanding service. ARG is proud to be a sponsor of the Clinical Education LinkedIn Forum, a closed peer-to-peer group on LinkedIn where healthcare professionals can ask clinical questions and receive evidence-based and clinical-based responses by experts in their field. Visit www.clinicaleducation.org/linkedin for more information & to sign up for free! Visit www.allergyresearchgroup.com for more information on ARG and our products. Transcript Karolyn Gazella: Hello. I'm Karolyn Gazella, the publisher of the Natural Medicine Journal. Today we are exploring the impact that probiotics can have on the gut microbiome. Before we begin, I'd like to thank the sponsor of this topic who is Allergy Research Group. My guest is naturopathic physician and a leading probiotic expert, Dr. Donald Brown. Dr. Brown, thank you so much for joining me. Donald J. Brown, ND: Hi Karolyn. It's a pleasure to talk to you. It's been a long time. Gazella: I know. Brown: How are you? Gazella: I'm doing great. I know. This is like old times. And you know, before we dig into this topic, I have to tell you that I am just fascinated by the human microbiome, and it seems like the research in this area has really exploded. Why is that? Brown: Well, I think, again, it's ironic as a naturopath talking about it because we've always talked about the impact that the intestinal tract has on health in general. Immune health, skin health, so forth and so on, and I think that what's happened is that particularly probiotic research has led us to realize that there's these microbes on our body. And we have a tendency in probiotics to focus on bacteria, but what's exploding in this area is that we have resident microbes that are viral microbes. We have fungal microbes that are natural inhabitants of our body. So looking at this, we're really talking about 40 trillion microbes, predominantly bacteria, and sort of the balance that we have with these microbes which are part of our body. And it's funny because the research [inaudible 00:01:54] dramatic, and we have 10 times more microbes on us and in us, mainly in us, than we have cells. And the new data is really indicating that that's not the case; it's about 1.3 to 1. So people who get itchy when they think that they have more bacteria on them than cells, it's not quite as dramatic as we thought. Again, I think it gets back to the fact that we're recognizing the fact that these things play such an interesting part in our health and our wellness, and when it tips in the wrong direction, our illness too. So expanding it out so we're not just looking at the microbes in the GI tract, but the microbes in other parts of our body as well. Gazella: Yeah, I think that's really some of the most interesting parts of this research is that it does expand beyond the intestinal tract. So as it relates to the human microbiome, remind us of the mechanisms of actions that probiotics have. How and why do probiotics even work? Brown: Well, probiotics ... When you think about the GI tract, the analogy I like to use, especially when I'm talking to the public ... talking to healthcare professionals here ... is it's sort of like a busy parking lot. And you have organisms that are health promoting, and then you have organisms that are potential pathogens, and they're looking for parking spots. Remember that bacteria ... viruses are the same way ... have to adhere to cells to be able to be either health promoting or disease promoting. So that's one of the first things that probiotics are doing is they're competing for spots. And once they actually set up house, they then start creating a micro-environment that is inhospitable to potential pathogens, producing things that are anti ... compounds that are antimicrobial. They alter the pH slightly to make it inhospitable for these microbes and really create a situation where, "Hey, this is our home. This is our neighborhood, and you're not welcome here" kind of a thing. The other thing that should resonate with most of the doctors on the phone is the whole idea of leaky gut and intestinal barrier function, too. It's one of the things that probiotics do once they set up house is they're also helping to produce mucin and to sort of keep those tight junctions in the intestinal tract, the cells healthy and intact. And that's very, very important. The other thing that they do is they also, in the colon, are producing short-chain fatty acids which are associated with reducing risk of cancer as we age. Production of short-chain fatty acids act to help with digestive health as well. And then one of the really interesting things that's really been discovered over the last, I would say, eight to 10 years, is that when these little bacteria actually bind, they're communicating through the intestinal wall with what are called dendritic cells which are funny-looking, little, sort of odd-looking starfish type things that send little feelers up through the ... into the epithelial cells. And the probiotics are actually communicating with them to sort of modulate the immune system. So they produce a little bit more of this, produce a little less of this. Inflammatory responses are also modulated through it. And then the last thing and one of the really, really interesting things right now is we're beginning to realize that the intestinal tract is communicating with the brain. So the gut-brain axis is what that's called, and we know that stress, for instance, can actually negatively impact the probiotics in the GI tract, the healthy bacteria in the GI tract, and in turn, through the vagal nerve going up to the hypothalamic-pituitary axis, actually modulates that response. So we're now finding out that probiotics may actually be involved in ... I'm sure you've done interviews where you talk about the HPA axis and stress response. We're now finding out that the GI tract is very, very directly involved in that. So it could be negatively impacted by stress but can also positively impact the HPA axis, which is a whole new mechanism of action which is wild. So we've got gut health, digestive health. We have immune health based on responses with the GI tract. Now we're finding out that there's actually effects on mood, stress response, that sort of thing. And that's not even covering the female genitourinary tract which has its whole population of probiotics that are positively affecting genitourinary tract health as well, so it's big. It's a vast influence on the body. Gazella: Yeah. There is a lot going on here with probiotics. I think that's why I like the topic so much because there's just so much to talk about. So when we're looking at the scientific literature and the research, what conditions have the most compelling research in terms of improved outcomes? I realize that this may be a pretty long list, given the mechanisms that you've just described, but take us through that list from a research perspective. Well, I think what I like to do is I like to start with the things that are accepted by the larger medical community. And one of those is the fact that we've known for a long time that probiotics have a positive effect on prevention of antibiotic-associated diarrhea. So I would put that probably at the top of the list of, hey, if I'm in a room and I've got people who are skeptical of alternative medicine, integrative medicine, that's always a good starting point because we have really solid data that antibiotics definitely are good at preventing that. My background is in pediatrics, and I think another area that has sort of reached a critical mass is actually ... it's fascinating ... is the prevention of atopic dermatitis in children who are potentially at risk. The studies started ... First one was in the Lancet in early 2000s, and basically the studies are looking at mom particularly but also whoever the partner is, and risk of ... that have a background of atopic diseases, allergic diseases, and actually starting to give mom probiotics during the second half of her last trimester. And then once the baby is born, if mom's nursing, continuing to give the probiotics to the mom until she stops. And then, anyway, it varies on the study, but usually then the infant starts to take the probiotics. What they're finding is that it's reducing the incidence of atopic dermatitis by about 50%. That's amazing to me because if you look at sort of tracking the use of the antibiotics in children on a graph and you look at the increase in atopic diseases, so you're looking at eczema, atopic dermatitis. You look at asthma. They track almost exactly if you look at from 25 years ago to now, they track almost exactly. And also cesarean births contributing to that as well where the microbiome, so that's really fascinating to me. I would say the other area, sort of shifting gears, that I think has reached a critical mass is also adjunctive use of probiotics in female genitourinary tract health. So treatment using standard treatments for things like bacterial vaginosis would probably be the top area, but also prevention of recurrence of urinary tract infections. We're, particularly in the bacterial vaginosis area, I think really reaching a point where we have enough data to sort of suggest that, hey, using these things really can help with prevention. And then I would probably put the last one, as we move into the immune system and we really have reached a critical amount of data. Not a lot of pediatric data but adult data now that suggests that routine use of probiotics seems to reduce the incidence of upper respiratory tract infections. So, again, I could go on and on and on. Gazella: Right. Yeah. Brown: There's a lot of stuff. There's a lot of stuff that's emerging and that we're sort of on the edge. But one of the things I think the listeners need to know about is the fact that I think we like to think about alternatives too, but one of the great things about probiotics is that adjunctive use. Obviously it's antibiotics, but Helicobacter pylori, for instance. The standard treatment of that is very rough on people. Recurrence rates are really high, so one of the themes that I always like to talk about when I talk in my lectures to healthcare professionals is that remember that a lot of the treatments that we use for ... Let's take urinary tract infections. E coli are really good at setting up what are called biofilms that are these little bits like taking a Visqueen sheet and putting it over themselves so that you can get to use the antibiotics. You can get to the ones that are not underneath the protective shield, but the ones that are under there don't get affected. So one of the things that probiotics are great about is going in and helping to break up that biofilm and actually make standard treatment perform better, and then continuing to use the probiotics actually reduce recurrence rates. So, and there's reduced recurrence rates, and there's a whole litany of examples of areas where if we use probiotics. I mentioned helicobacter pylori but also UTI's, bacterial vaginosis, where probiotics actually help the treatment go better, outcomes are better, and then really reduces recurrence rates. Gazella: Yeah. That's such a good point and you know, you mentioned antibiotics and how they disrupt gut flora and how probiotics can help reverse that dysbiosis. Are there other medications that kind of do the same thing as antibiotics where they disrupt that gut microbiota diversity and that probiotics may be able to help reverse that? Brown: We're thinking that some of the more aggressive inflammatories that people take may have an affect. That's still sort of in the early phases. One of the early ones, interesting ones that there's still a limited amount of data, but I actually reviewed it, was a study with a proton pump inhibitor, so things that we're using for reflex and that sort of thing, having a very negative effect on the microbiome. So, we're sort of still in the early stages of learning what specific drugs and the effects are. Obviously antibiotics would the be the easiest case study, because we can actually look at the what affects. They've done studies with people who are getting the triple therapy for helicobacter pylori and realizing that during that therapy, the healthy bacteria in the G.I. tract can be reduced by as much as 80%. If we use probiotics, during that treatment, it reduces that to 40 to 50% and then if we continue to use it after, people tend to bounce back quicker. There are other drugs that we know are beginning to emerge that have negative effects, but stay tuned on that one. Gazella: Right. Right. Now, let's switch gears and talk little bit about strains, because I know that that's a hot topic. So, specifically for the conditions that you mentioned in helping to restore gut microbiota that's been disrupted by medications like you were just talking about, what are the more common strains used for these types of clinical applications? If you don't mind my backing that up, I am very, very disturbed when I hear people lecturing who say that strains don't matter. I go to a lot of international conferences. I sit on committees that set standards, international standards for probiotics and it is something that experts who know a lot more about this area than I do are upset about, because there are people out there who are saying that it's species specific and strains don't matter. I beg to differ. I think that it's very, very important that health care professionals realize that, particularly health care professionals realize that ... and Karolyn, you've known me for a long time. We've done interviews about [bontanical 00:16:20] medicine that I'm an evidenced based person. I like to see the ... particularly if we're talking about treating a condition. And so when we go from species level where there's very little research to strain level, we emerge into an area where we know what the dosage was, that was used in the study. Particularly when we talk about pediatrics, we talked about people who might be immune compromised. We talked about older folks like myself. It's important also to ... safety is pertinent too and that's one of the areas that is a little bit of a red flag for me with the whole probiotic area. Particularly on the commercial side where we have this race to do all these different things and some of the species level stuff that's being sold has not been clinically studied. And so, very, very important that people realize that some of the standards that go around a strain or viability is the lack of bacillus or the bifidobacterium strain that you're using shown to be viable. Does it actually adhere in the intestine is one of the things that we now have the ... within the persons body, but we now have technology that can actually show that these things sort of do adhere, and how long they adhere, and how long they stick around. Another thing that's really important that I've given many lectures to health care professionals is they don't think about is that we also don't want these strains, what's called trans located, we don't want them to go from the intestine to the blood stream. And they're having case studies. There was a paper published a number of years ago on people who were really severely immune compromised where the probiotic that was being ... it was a specific strain actually trans located into the blood stream and caused sepsis. People then had to be treated with very aggressive antibiotics. So, we don't want them to go from the intestinal tract into the blood stream. Another one that's [inaudible 00:18:39] ... we're talking about antibiotics, I always chuckle when I remiss on this one is also we realized that hey, probiotics are good for people who are taking antibiotics, but we also want to be sure that the probiotics strain has been tested for not blocking the ability of the antibiotic to do it's job. So, it's called antibiotic resistance. And it can be transferable. They have run into organisms that we think are probiotics that actually have a negative effect on an antibiotic doing it's job, so that's important. I already talked about safety and efficacy. I'm all about that. A silly one that I just want to toss in that's talked about internationally, that I still bump into in the U.S. more so than in other areas is the fact when we talk about being a probiotic supplement, we want to look at the label, and we want to be sure that these stability, or the shelf life of the product is actually been proven to the time expiration. There are still a lot of probiotic products that are sold in the United States that actually declare their potency at the time of manufacture, which is like, well okay, but I have a vitamin C product. They told me the potency when it was manufactured, but it says it has a two year shelf life. Have they actually tested that? Has that actually been proven? And so, remember, these are living organisms. Very, very important that stability or shelf life be proven for these as part of the choice of picking a supplement.  Gazella: Well, I was just going to say, do you have some go to strains that you like to focus on when it comes to recommending probiotics? Brown: I think there's a lot of them right now, actually. That's another area where we could probably go on and on about. There are what I like to call legacy strains that have been around for a while that have a lot of research on them that have ... and we also understand their mechanism of action really well. The one that people probably know the most is lactobacillus GG, which is a rhamnosus strain that was discovered by a couple of guys in Boston. I always like it when they give their own name to the strains. It was Gorbach and Goldin I think were their names, so they named it lactobacillus GG. But anyway, that one has been around for a long time. A lot of really, really excellent research. Some of the bifidobacterium strains from Japan from [Morinaga 00:21:24] is the name of the company, have a lot of research, particularly in the pediatric area. Been around really since the ... lactobacillus GG, since the early '60's, the Morinaga [inaudible 00:21:38] really since the '50's. The Japanese were doing isolation in human studies long before we were doing them here in the U.S. Brown: Another one that I really like is lactobacillus acidophilus DDS-1. It's an interesting strain that was discovered by a guy named Dr. [Shahani 00:21:56]. By the way, all of these strains that we're talking about are derived from humans. These are human derived strains and this one was actually discovered and isolated first in 1959. And like the lactobacillus GG and some of the Morinaga strains has a lot of clinical research. It also ... in vitro research that shows that it adheres, that it survives. And then human trials, actually looking at it's ability to treat things like travelers diarrhea, prevent antibiotic associated diarrhea, those sorts of things. When I look at products, I always look at what's the indication? What's been studied? There's commercial strains the lactobacillus, I'm sorry rhamnosus HN001, for instance, in the atopic dermatitis prevention area that has phenomenal studies. And so there are a number of strains out there that have reached that critical point of whether its specific to one condition or have been looked at in other areas that have really excellent data. And again, being somebody whose background was in pediatrics, I'm always also looking at what's your safety data as well. That would be an example of a few strains that I think have really excellent data. Gazella: Yeah. That's good. And you know, not that long ago, we were seeing maybe just one or two species, one or two strains. Now we're seeing multi species, multi strains in these formulations, sometimes six, nine, twelve different species or strains in one formulation. Is that a good thing? Brown: Sometimes it's a commercial thing. Here's my theory and I could easily be misproven [inaudible 00:23:58], but or unproven. Are you misproven or unproven? Which- Gazella: I'm not sure. Brown: Called out for my lack of proof. My answer to that, when I get asked that, and it's more common when I'm lecturing to the public or to managers of supplement sections is that probably for wellness purposes. So if I'm taking a probiotic or if I'm a doctor and I'm recommending a probiotic supplement to be taken daily, I probably would use something that's a little bit more of a multi strain. Sort of a balance between the lactobacilli family and the bifidobacterium family. That's a sort of my go to. And as you get into the senior population, seniors have a tendency to have a drop in the bifido. That's probably dietary related, because fiber and that sorts of things, they like to feed on ... They're probably eating less fiber in their diet. But anyway. Having a balance of a number of strains, is there a magical number of strains? I don't think so at this point. I don't think anybody's proven that. I think the difficulty ... what I say to people is, is that when you shift, it's much easier to talk about a single strain or a combination of a couple strains. You know, in irritable bowel syndrome, inflammatory bowel disease, BSL-3 has eight different strains in it. I mean, that's a lot of strains. It's been around for a long time. They use very high doses, but its easier to look at disease endpoints when we do a clinical trials, because we have very clear outcomes that we're looking for compared to what's a placebo, for instance, Wellness studies are really hard to do, so I don't know that there's an easy answer to your question because I don't know if the company after I ... know a lot of them, and some of them have a lot of ... have deep pockets. I don't know who's gonna do a wellness study that shows that, "Hey, if you do this many strains at this potency, that it works better than if you only do one strain at this potency, or if you do nothing." 'Cause those are expensive studies to do. Gazella: Yeah. Totally. And I'm gonna ask you another unfair question, and it's regarding dosage. You know that can be somewhat controversial, still debatable. How do you dose probiotics or recommend ... What's your philosophy on the dosage? Brown: Well, I always start with what is the clinical. If I'm treating a specific condition and I'm using an evidence-based strain I dose it at the dose. And it's interesting, 'cause there's extremes and that's one of the issues when we look at meta-analyses that have been done, so stuff like say, not only was there this cacophony of strains that were used, going from one strain to five strains. That sort of thing. But the dose, the potency and we measure the potency of probiotics, what are called colony forming units so we talk about milligrams or gram amounts of these things. So I always try to look up with what the research showed. Again, leading back to wellness and sort of, regular use. I have a patient who's take a multi-vitamin, who's taking fish oil every day and I say, "Hey, one of the things you should think about is keeping your intestinal tract healthy and probiotics are gonna contribute to that, keeping your immune system healthy." I don't have an easy answer for that. I typically use multi-strains and I'll probably usually go in the 10 to 50 billion CFU per day. Is that correct? Is there clinical data to back that up? The answer is no, I don't know for sure. But that's sort of how I think. The one thing that I can tell you is that I remember a client who decided to go high potency and high potency is definitely [inaudible 00:28:23] was like 25 billion CFUs per instance, it was like a shot across the balance. It was 12 years ago. And I'm freaking out because [inaudible 00:28:33]. You can't go run 5 billion CFUs per day or people gonna be having a [inaudible 00:28:41] reaction or getting thrown out of dinner parties 'cause they're farting and having to go to the bathroom all the time. So what I can tell you is that we have enough data now in healthy people that if we go to, even, 100 billion CFUs per day that we're not seeing any adverse effects. We're usually with this ... How much of that is actually ... adhering how much of it is actually having an impact versus 40 billion, 50 billion or even 10 billion for that instance. So that's another one that's gonna be interesting to see how that evolves. There's obviously, particularly on the retail side in this race to see who can come out with the highest potency with most strains and we'll see how that goes. Gazella: Right, yeah. Well, I think that was a difficult question and you answered it brilliantly. So now it seems like many probiotics on the market are actually synbiotics because they combine pro and prebiotics. Now, what's your view about this combination and why are more companies going in that direction? And am I right, are companies going in this direction? Brown: Well, here's my criticism of that and I like synbiotics. I think the whole concept is an interesting one. On the retail commercial sense, it's been difficult for consumers to wrap their head around a probiotic and then also there's this concept called prebiotics and then again for people who are listening, a prebiotic is basically something that acts as a food for probiotics to feed on and grow and encourage growth even on their own. The issue that I have with a lot of products that combine probiotics and prebiotics, whether it's FOS, GOS, XOS now is another one that's used. Now these are basically complex sugars. Really, for all intents and purposes, kind of fibers. All of the FDAs now said that they are probably not gonna qualify to make the cut. The problem is that if you look at the studies on the prebiotics, the dosages are way higher than what you're gonna put into a capsule. There are some probiotic products that I've seen that have ... that are powders or that are in the sachets where you can actually get the prebiotic up to a dose that actually has any meaningful effect clinically. So remember with prebiotics, we're rack out a low of a gram and many of the studies were as high as 10 to 15 grams. So again, really important to sort of ... And I know this is a challenge for people who are in clinical practice because they're trying to treat some patients with what they think is the best, but it's really an issue of, again, getting back to sort of ... Does the company make an attempt to sort of match up the dosage of the prebiotic that actually showed an effect, a positive effect on probiotics? And that's a challenge. That your delivery yet [inaudible 00:31:50] in capsules, it's under dose. You don't get enough of the prebiotic. Gazella: Yeah, that's really interesting because I was not aware of that. So, that's a good heads up there. Now you talked about safety, but are there any contraindications that clinicians should be aware of? Direct contraindications that says, "This patient should not be on probiotics"? Brown: The area that I'm most cautious about ... I used to think it was premature infants, very low growth weight infants, but there's been enough research. When you ask, probably why the other thing too, that would be our [inaudible 00:32:24] list of things that have really reached critical masses, prevention of what's called Necrotizing Enterocolitis and in very low growth rate entrance ... fascinating and it worked. It's basically saving lives is what we are talking about. The death rate from that is quite high. So used to saying, "Hey, these kids are born ... GI tracts not really developed." That's a potentially dangerous use in that population. The answer to that is "No, actually. It's actually good." I would still continue to encourage on healthcare professionals to be very selective in strains that they use in people ... HIV positive, AIDS, people with really severe immune deficiencies. Cancer patients who ... technically more advanced cancer. Be very selective and try to get to the best of their possibility, look at the data and say, "Okay, this is strain that actually was used in that population and works." That would not ... Those two populations are ... that collection of population severely immunocompromised people is not one that I could, probably just use any probiotic supplement. Particularly multi-strain, high potency without doing any sort of research. I'm very selective and usually do one strain or two strains in that population that I feel have enough safety data. Gazella: Yeah, that's good advice. Anything else that you'd like to add on the topic of probiotics for listeners that you'd like to leave them with? Brown: Again, I just think that it very, very important to first and foremost, and I'm repeating myself. First and foremost look at if you're using it for specific use. We didn't even get into female genital urinary tract health nursing. Really amazing stuff going on in that area. Your oral use of probiotics to actually, finding that they're populating in the vagina and that you're getting significant effects, which is amazing. We used to think you'd have to use everything with ... through a vaginal, pessary type of an effect. So that's it. I think again, trying as much as possible to deal with companies that are trying to ... that are working with strain suppliers or strain suppliers that are manufacturing products for them that are looking at the essentials that we talked about at the beginning. It's really, really important to me. And also again, trying to insist that companies refer back to the data on specific strains as opposed to just saying "It doesn't matter, you can use anything you want." I'm horrified when I go to professional lectures and I hear ... For instance, medical doctor getting up and saying that it's [inaudible 00:35:14]. So it goes against every thing that is accepted in the probiotic world. So, again, a lot of white noise in this area. Healthcare professionals are going to be as susceptible to it as consumers are but that's a couple of areas where I think you can sort of cut through that and try to get to what really has been shown to be effective and safe. Gazella: Yeah. I mean, it's a big topic for sure. We're going to have you back to dig in a little bit more deeply on some of these topics, but I want to thank you for definitely shedding some light on this important topic, and helping us get through it. And I'd also like to once again thank the sponsor of this topic, who is Allergy Research Group. So Dr. Brown, thank you again for giving us all this wonderful information and I hope you have an awesome day. Brown: Thank you Karolyn.

The August 2017 edition of the JAAPA podcast with hosts Adrian Banning and Kristopher Maday. Content this month includes a review of necrotizing enterocolitis (NEC) and safer high altitude travel. Kris and Adrian also discuss articles exploring the role of physical activity in cognitive aging and the role of Canadian PAs in mental health. Plus, there's a quick recertification of aortic regurgitation and Kris takes a trip down memory lane.

Abdominal pain is common; so are strongly held myths and legends about what is concerning, and what is not.   One of our largest responsibilities in the Emergency Department is sorting out benign from surgical or medical causes of abdominal pain.  Morbidity and mortality varies by age and condition.   Abdominal Surgical Emergencies in Children: A Relative Timeline General Advice Neonate (birth to one month) Necrotizing Enterocolitis Pneumatosis Intestinalis. Essentials: Typically presents in 1st week of life (case reports to 6 months in chronically ill children) Extend suspicion longer in NICU graduates Up to 10% of all cases of necrotizing enterocolitis are in full-term children Pathophysiology is unknown, but likely a translocation of bacteria Diagnosis: Feeding intolerance, abdominal distention Abdominal XR: pneumatosis intestinalis Management: IV access, NG tube, broad-spectrum antibiotics, surgery consult, ICU admission Intestinal Malrotation with Volvulus Essentials: Corkscrew Sign in Malrotation with Volvulus Bilious vomiting (80-100%) in the 1st month; especially in the 1st week May look well initially, then rapidly present in shock Ladd’s bands: abnormally high tethering of cecum to abdominal wall; peristalsis, volvulus, ischemia Diagnosis: History of bilious emesis is sufficient to involve surgeons Upper GI series: corkscrew appearance US (if ordered) may show abnormal orientation of and/or flow to superior mesenteric artery and vein Management: Stat surgical consult IV access, resuscitation, NG tube to decompress (bowel wall perfusion at risk, distention worsens) Hirschprung Disease Essentials: Problem in migration of neural crest cells Aganglionic colon (80% rectosigmoid; 15-20% proximal to sigmoid; 5% total colonic aganglionosis) colon (known as short-segment disease) Poor to no peristalsis: constipation, perforation, and/or sepsis Diagnosis: May be diagnosed early as “failure to pass meconium in 1st 48 hours” In ED, presents as either bowel obstruction or enterocolitis Contrast enema Beware of the toxic megacolon (vomiting, distention, sepsis) Management: Resuscitation, antibiotics, NG tube decompression, surgical consultation; stable patients may need rectal biopsy for confirmation Staged surgery (abdominoperineal pull-through with diverting colostomy, subsequent anastomosis) versus one-stage repair. Infant and Toddler (1 month to 2 years) Pyloric Stenosis Essentials: Hypertrophy of pyloric sphincter; genetic, environmental, exposure factorsString Sign in Pyloric Stenosis. Diagnosis: Hungry, hungry, not-so-hippos; they want to eat all of the time, but cannot keep things down Poor weight gain (less than 20-30 g/day) US: “π–loric stenosis” (3.14); pylorus dimensions > 3 mm x 14 mm UGI: “string sign” Management: Trial of medical treatment with oral atropine via NGT (muscarinic effects decrease pyloric tone) Ramstedt pyloromyotomy (definitive) Intussusception Essentials: Majority (90%) ileocolic; no pathological lead point Small minority (4%) ileoileocolic due to lead point: Meckel’s diverticulum, polyp, Peyer’s patches, Henoch-Schönlein purpura (intestinal hematoma) Diagnosis: Target Sign (Donut Sign). Ultrasound sensitivity and specificity near 100% in experienced hands Abdominal XR may show non-specific signs; used mainly to screen for perforation before reduction Management: Hydrostatic enema: contrast (barium or water-soluble contrast with fluoroscopy) or saline (with ultrasound) Air-contrast enema: air or carbon dioxide (with either fluoroscopy or ultrasound); higher risk for perforation than hydrostatic (1% risk), but generally safer than perforation from contrast Consider involving surgical service early (precaution before reduction) Traditional disposition is admission; controversial: home discharge from ED Young Child and Older (2 years and up) Appendicitis Essentials: Appendicitis occurs in all ages, but rarer in infants. Infants do not have fecalith; rather they have some other anatomic or congenital condition.  More common in school-aged children (5-12 years) and adolescents Younger children present atypically, more likely to have perforated when diagnosed. Diagnosis: Non-specific signs and symptoms Often have abdominal pain first; vomiting comes later Location/orientation of appendix varies Appendicitis scores vary in their performance Respect fever and abdominal pain   Management: Traditional: surgical On the horizon: identification of low-risk children who may benefit from trial of antibiotics If perforated, interval appendectomy (IV antibiotics via PICC for 4-6 weeks, then surgery) Obstruction SBO. Incarcerated Inguinal Hernia. Essentials: Same pathophysiology and epidemiology as adults: “ABC” – adhesions, “bulges” (hernias), and cancer. Diagnosis: Obstruction is a sign of another condition. Look for cause of obstruction: surgical versus medical Abdominal XR in low pre-test probability CT abdomen/pelvis for moderate-to-high risk; confirmation and/or surgical planning Management: Treat underlying cause NG tube to low intermittent wall suction Admission, fluid management, serial examinations   Take these pearls home: Consider surgical pathology early in encounter Resuscitate while you investigate Have a low threshold for imaging and/or consultation, especially in preverbal children   Selected References Necrotizing Enterocolitis Neu J, Walker A. Necrotizing Enterocolitis. N Eng J Med. 2011; 364(3):255-264. Niño DF et al. Necrotizing enterocolitis: new insights into pathogenesis and mechanisms. Nature. 2016; 13:590-600. Walsh MC et al. Necrotizing Enterocolitis: A Practitioner’s Perspective. Pediatr Rev. 1988; 9(7):219-226. Malrotation with Midgut Volvulus Applegate KE. Intestinal Malrotation in Children: A Problem-Solving Approach to the Upper Gastrointestinal Series. Radiographics. 2006; 26:1485-1500. Kapfer SA, Rappold JF. Intestinal Malrotation – Not Just the Pediatric Surgeon’s Problem. J Am Coll Surg. 2004; 199(4):628-635. Lee HC et al. Intestinal Malrotation and Catastrophic Volvulus in Infancy. J Emerg Med. 2012; 43(1):49-51. Martin V, Shaw-Smith C. Review of genetic factors in intestinal malrotation. Pediatr Surg Int. 2010; 26:769-781. Nehra D, Goldstein AM. Intestinal malrotation: Varied clinical presentation from infancy through adulthood. Surgery. 2010; 149(3):386-391. Hirschprung Disease Amiel J, Sproat-Emison E, Garcia-Barcelo M, et al. Hirschsprung disease, associated syndromes and genetics: a review. J Med Genet 2008; 45:1. Arshad A, Powell C, Tighe MP. Hirschsprung's disease. BMJ 2012; 345:e5521. Aworanti OM, McDowell DT, Martin IM, Quinn F. Does Functional Outcome Improve with Time Postsurgery for Hirschsprung Disease? Eur J Pediatr Surg 2016; 26:192. Clark DA. Times of first void and first stool in 500 newborns. Pediatrics 1977; 60:457. Dasgupta R, Langer JC. Evaluation and management of persistent problems after surgery for Hirschsprung disease in a child. J Pediatr Gastroenterol Nutr 2008; 46:13. De Lorijn F, Reitsma JB, Voskuijl WP, et al. Diagnosis of Hirschsprung's disease: a prospective, comparative accuracy study of common tests. J Pediatr 2005; 146:787. Doig CM. Hirschsprung's disease and mimicking conditions. Dig Dis 1994; 12:106. Khan AR, Vujanic GM, Huddart S. The constipated child: how likely is Hirschsprung's disease? Pediatr Surg Int 2003; 19:439. Singh SJ, Croaker GD, Manglick P, et al. Hirschsprung's disease: the Australian Paediatric Surveillance Unit's experience. Pediatr Surg Int 2003; 19:247. Suita S, Taguchi T, Ieiri S, Nakatsuji T. Hirschsprung's disease in Japan: analysis of 3852 patients based on a nationwide survey in 30 years. J Pediatr Surg 2005; 40:197. Sulkowski JP, Cooper JN, Congeni A, et al. Single-stage versus multi-stage pull-through for Hirschsprung's disease: practice trends and outcomes in infants. J Pediatr Surg 2014; 49:1619. Pyloric Stenosis Aspelund G, Langer JC. Current management of hypertrophic pyloric stenosis. Semin Pedaitr Surg. 2007; 16:27-33. Dias SC et al. Hypertrophic pyloric stenosis: tips and tricks for ultrasound diagnosis. Insights Imaging. 2012; 3:247-250. Kawahara H et al. Medical treatment of infantile hypertrophic pyloric stenosis: should we always slice the olive? J Pediatr Surg. 2005; 40:1848-1851. Mack HC. Adult Hypertrophic Pyloric Stenosis. Arch Inter Med. 1959; 104:78-83. Meissner PE et al. Conservative treatment of infantile hypertrophic pyloric stenosis with intravenous atropine sulfate does not replace pyloromyotomy. Pediatr Surg Int. 2006; 22:1021-1024. Mercer AE, Phillips R. Can a conservative approach to the treatment of hypertrophic pyloric stenosis with atropine be considered a real alternative to pyloromyotomy? Arch Dis Child. 2013; 95(6): 474-477. Pandya S, Heiss K, Pyloric Stenosis in Pediatric Surgery.Surg Clin N Am. 2012; 92:527-39. Peters B et al. Advances in infantile hypertrophic pyloric stenosis. Expert Rev Gastroenterol Hepatol. 2014; 8(5):533-541. Intussusception Apelt N et al. Laparoscopic treatment of intussusception in children: A systematic review. J Pediatr Surg. 2013; 48:1789-1793. Applegate KE. Intussusception in Children: Imaging Choices. Semin Roentgenol. 2008; 15-21. Bartocci M et al. Intussusception in childhood: role of sonography on diagnosis and treatment. J Ultrasound. 2015; 18 Gilmore AW et al. Management of childhood intussusception after reductiion by enema. Am J Emerg Med. 2011; 29:1136-1140.:205-211. Chien M et al. Management of the child after enema-reduced intussusception: hospital or home? J Emerg Med. 2013; 44(1):53-57. Cochran AA et al. Intussusception in traditional pediatric, nontraditional pediatric, and adult patients. Am J Emerg Med. 2011; 523-527. Loukas M et al. Intussusception: An Anatomical Perspective With Review of the Literature. Clin Anatomy. 2011; 24: 552-561. Mendez D et al. The diagnostic accuracy of an abdominal radiograph with signs and symptoms of intussusception. Am J Emerg Med. 2012; 30:426-431. Whitehouse et al. Is it safe to discharge intussusception patients after successful hydrostatic reduction? J Pediatr Surg. 2010; 45:1182-1186. Appendicitis Amin P, Chang D. Management of Complicated Appendicitis in the Pediatrc Population: When Surgery Doesn’t Cut it. Semin Intervent Radiol. 2012; 29:231-236 Blakely ML et al. Early vs Interval Appendectomy for Children With Perforated Appendicitis. Arch Surg. 2011; 146(6):660-665. Bundy DG et al. Does This Child Have Appendicitis? JAMA. 2007; 298(4):438-451. Cohen B et al. The non-diagnostic ultrasound in appendicitis: is a non-visualized appendix the same as a negative study? J Pediatr Surg. 2015 Jun;50(6):923-7 Herliczek TW et al. Utility of MRI After Inconclusive Ultrasound in Pediatric Patients with Suspected Appendicitis. AJT. 2013; 200:969-973. Janitz et al. Ultrasound Evaluation for Appendicitis. J Am Osteopath Coll Radiol. 2016; 5(1):5-12. Kanona H et al. Stump Appendicitis: A Review. Int J Surg. 2012; 10:4255-428. Kao LS et al. Antibiotics vs Appendectomy for Uncomplicated Acute Appendicitis. Evid Based Rev Surg. 2013;216(3):501-505. Petroianu A. Diagnosis of acute appendicitis. Int J Surg. 2012; 10:115-119. Mazeh H et al. Tip appendicitis: clinical implications and management. Amer J Surg. 2009; 197:211-215. Puig S et al. Imaging of Appendicitis in Children and Adolescents. Semin Roentgenol. 2008; 22-28. Schizas AMP, Williams AB. Management of complex appendicitis. Surgery. 2010; 28(11):544-548. Shogilev DJ et al. Diagnosing Appendicitis: Evidence-Based Review. West J Emerg Med. 2014; 15(4):859-871. Wray CJ et al. Acute Appendicitis: Controversies in Diagnosis and Management. Current Problems in Surgery. 2013; 50:54-86 Intestinal Obstruction Babl FE et al. Does nebulized lidocaine reduce the pain and distress of nasogastric tube insertion in young children? A randomized, double-blind, placebo-controlled trial. Pediatrics. 2009 Jun;123(6):1548-55 Chinn WM, Zavala DC, Ambre J. Plasma levels of lidocaine following nebulized aerosol administration. Chest 1977;71(3):346-8. Cullen L et al. Nebulized lidocaine decreases the discomfort of nasogastric tube insertion: a randomized, double-blind trial. Ann Emerg Med. 2004 Aug;44(2):131-7. Gangopadhyay AN, Wardhan H. Intestinal obstruction in children in India. Pediatr Surg Int. 1989; 4:84-87. Hajivassiliou CA. Intestinal Obstruction in Neonatal/Pediatric Surgery. Semin Pediatr Surg. 2003; 12(4):241-253. Hazra NK et al. Acute Intestinal Obstruction in children: Experience in a Tertiary Care Hospital. Am J Pub Health Res. 2015; 3(5):53-56. Kuo YW et al. Reducing the pain of nasogastric tube intubation with nebulized and atomized lidocaine: a systematic review and meta-analysis. J Pain Symptom Manage. 2010 Oct;40(4):613-20.  . Pediatric Surgery Irish MS et al. The Approach to Common Abdominal Diagnoses in Infants and Children. Pedaitr Clin N Am. 1998; 45(4):729-770. Louie JP. Essential Diagnosis of Abdominal Emergencies in the First Year of Life. Emerg Med Clin N Am. 2007; 25:1009-1040. McCullough M, Sharieff GQ. Abdominal surgical emergencies in infants and young children. Emerg Med Clin N Am. 2003; 21:909-935. Pepper VK et al. Diagnosis and Management of Pediatric Appendicitis, Intussusception, and Meckel Diverticulum. Surg Clin N Am. 2012   This post and podcast are dedicated to Mr Ross Fisher for his passion and spirit of collaboration in all things #FOAMed.  Thank you, sir!

An discussion of the medical and operative management of necrotizing enterocolitis between Todd Ponsky, MD and Gail Besner, MD. Dr. Besner is a H. William Clatworthy Professor of Pediatric Surgery, Chief of the Department of Pediatric Surgery, Principal Investigator of the Center of Perinatal Research, and Associate Director of the Pediatric Surgery Training Program at Nationwide Children's Hospital. Table of Contents 00:00:00 Introduction 00:02:41 Work-up of NEC 00:04:02 Medications associated with NEC 00:05:24 Physical Examination 00:07:04 Laboratory Work 00:08:44 Imaging studies 00:09:15 When to Operate on NEC 00:10:45 Medical Management of NEC 00:12:23 Antibiotic regimen 00:13:19 Frequency of imaging studies 00:13:55 Length to continue medical management 00:14:39 Stricture after NEC 00:15:43 When to operate after medical management without absolute indication 00:17:11 Peritoneal drain versus laparotomy 00:19:42 Randomized control trials comparing peritoneal drain and laparotomy 00:22:51 How to choose between peritoneal drain and laparotomy 00:26:03 Peritoneal drain placement technique 00:28:12 Operating after placement of a peritoneal drain 00:29:34 Management of patient after peritoneal drain placement 00:30:59 Laparotomy technique 00:33:39 Operative management of focal necrotic area 00:34:41 Creating a stoma 00:36:50 Management of Diffuse NEC 00:37:58 Management of skip lesions 00:39:21 When to reverse the stoma 00:40:34 Re-feeding mucous fistula 00:42:04 Management of NEC totalis 00:44:05 Management of tension pneumoperitoneum Intro and outro track is adapted from "I dunno" by grapes, featuring J Lang, Morusque. Artist URL: ccmixter.org/files/grapes/16626 License: http://creativecommons.org/licenses/by/3.0/

Dr. Sheila Gephart. Photo courtesy of Dr. Sheila Gephart. Episode 8 features Dr. Sheila Gephart, neonatal nurse scientist and assistant professor at the University of Arizona College of Nursing. During this episode, Dr. Gephart provides a comprehensive overview of GutCheckNEC, a first-of-its-kind, 10-item risk assessment that she developed for the early detection of NEC in premature infants. She discusses: * Her transition from bedside nurse in the neonatal intensive care unit to her development of GutCheckNEC—what she calls a “real-time, early warning score for NEC,”* The 10 risk factors that make up GutCheckNEC, their associated symptoms, and how risk is communicated,* The development of NEC Zero, an intervention that has evolved out of the Unit NEC rate component of GutCheckNEC,* The strength of evidence for the use of probiotics in the prevention of NEC, and* The importance of shared decision making in the NICU. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. [powerpress] STEPHANIE VAUGHAN, HOST: Welcome to Episode 8 of Speaking of NEC—a free, audio podcast series about Necrotizing Enterocolitis. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org. Hello, my name is Stephanie Vaughan. Welcome to the show. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. Today, my guest will be Dr. Sheila Gephart, neonatal nurse scientist and assistant professor at the University of Arizona College of Nursing, who developed a first-of-its-kind, 10-item risk assessment for the early detection of NEC in premature infants called GutCheckNEC. During our conversation, she will discuss in varying degrees: Her transition from bedside nurse in the neonatal intensive care unit to her development of GutCheckNEC—what she calls a “real-time, early warning score for NEC,” The 10 risk factors that make up the acronym GutCheck and their associated symptoms How risk is communicated, The significance of the Unit NEC rate component in GutCheckNEC, and how that led her to develop the NEC Zero Intervention, The strength of evidence for the use of probiotics in the prevention of NEC, and The importance of shared decision making in the NICU. With that in mind, let me introduce my guest today. Hi, welcome to the show. This is my guest, Dr. Sheila Gephart. She is a neonatal nurse scientist from the University of Arizona College of Nursing. Hi, Sheila, how are you? DR. SHEILA GEPHART, GUEST: Good, thank you, Stephanie! STEPHANIE: Thank you! So, we have had more than one person mention you on our show in previous episodes, so I’m thrilled to have you join me today and would love to let you talk a little bit about your background and how you got involved with Necrotizing Enterocolitis. DR. GEPHART: Well, I am very thankful to be asked to be on the broadcast today, and I will tell you that I started my interest in Necrotizing Enterocolitis risk understanding when I was a bedside nurse. I have been a nurse since 1997, and I worked in the neonatal intensive care unit as a bedside nurse taking care of babies, and many of them were really convalescing. They were doing well, but then we had a subset of babies, or a clump of babies, that all developed this horrible disease within about three weeks. And now I know the clustering of NEC is very common, or not common, but it does happen. STEPHANIE: Right. DR. GEPHART: But then I didn’t really understand a whole lot about the disease, but I was very concerned because I realized that we had been concerned about these babies, as nurses, for hours to days before the actual diagnosis of NEC was made. So what happened at that point was I had the role of getting into the data for our NICU. I collected the data and reported the data for a large registry called the Vermont Oxford Network. And so I was focused on looking at the baby’s case and looking at the research and looking at the data, and I realized that there was a constellation of risk factors that kind of coalesced for these kids, that all of these things seemed to snowball with these babies who developed NEC, and we really had no context for talking to physicians to communicate why we were concerned. We were using terms like something’s not right with this baby, and from there, it really launched me into the next five years of understanding more about NEC risk. STEPHANIE: Okay. And can you talk to me a little bit about the protocol – I think it’s a protocol -- that you’ve developed called GutCheckNEC and how you got from starting to look at the data to compiling and understanding this set of risk factors? DR. GEPHART: Sure, I’m happy to talk about GutCheckNEC. So, being a bedside nurse, sometimes I would work in the middle of the night, and I needed a strategy for putting things together so I could remember them. And when I thought about NEC, I thought about well, we just need to check the gut. So GutCheck was kind of how it organized these risk factors, and I wrote GutCheck in a line straight down, and I remember one day I was at a delivery, and it was about three in the morning and it was taking a while for the baby to be born. And I was trying to understand all of the research that I had been reading about NEC risk and so what I did was I write GutCheck straight down on a napkin and horizontally for each letter I wrote the risk factor that was associated with that letter, and so that helped me organize what I was reading in the literature. But really it started out as just wanting to develop a risk assessment so nurses could really know what the risk factors were, physicians could know what the risk factors were, but then also put the symptoms in the context of what was going on with the baby. So that’s where I started, but then I went into a Ph.D. program, and in science you have to be very systematic. And so my literature review was the systematic beginning. But then what I did was I asked neonatal NEC experts how relevant they thought the different risk factors were to actually developing NEC. So I asked them to rate the relevance, and we went through three rounds of surveys to determine if we had the right list of risk factors, so that was very useful. We got rid of some, we kept most of them and added a few. And then, the next step was I got a very large dataset from a group of neonatal practices here in the US called The Pediatrics Medical Group, and I built, this is research speak, but I will tell you that I threw all of the risk factors into a statistical model to see what fell out as the most important, and the way statistical models work is that they keep the most important things that account for most of the explanation for what you’re looking at, and they get rid of everything that’s not quite so important. STEPHANIE: Okay. DR. GEPHART: So we went from like 33 risk factors down to essentially ten risk factors for GutCheckNEC. And then we tested it to see if it actually discriminated or told the difference between the kids that got NEC and the ones who didn’t, and it showed pretty good discrimination, or separation of groups, for the kids who had the most severe NEC compared to those who didn’t get NEC at all. STEPHANIE: Okay. DR. GEPHART: So that was the work we did, and now we’re taking this ten item tool and we’re trying to combine it with clinical science so that we can really have a real time early warning score for NEC. STEPHANIE: Great. Can you sort of go down the list just for parents that might be listening or family members if they’re seeing any of these risk factors? DR. GEPHART: Sure, I’d be happy to do that. The items that we kept in GutCheckNEC, like I said, there are two versions. There’s the one before the statistical modeling and then there is the one after, and the one that’s before is actually more comprehensive. And if you think about just writing GutCheck down linearly, you think for G, you’ve got growth restricted, so they’re born really small for gestational age, you’ve got gestational age. Those are the main ones that I always thought of with the G. And then with U, the one item that the experts recommended adding was the unit NEC rate, because infants who are in units with high NEC rates are more likely to get NEC, and so I didn’t understand that finding. I’ll talk about that in a minute, about the unit NEC rate. T, if you talk about T, transfusion. There is an association that we see in lots of studies with transfusion and NEC. We don’t see any evidence of causation, but the studies aren’t designed to show us that, so there is a temporal relationship or a time based relationship between transfusion and the most severe NEC. That said, there is a lot of babies who get transfusions and don’t get NEC. So that’s what makes it hard. STEPHANIE: Right. DR. GEPHART: What else goes with T? I’m going to stick to the final version, okay, as we think through the acronym. And then for C, signs of infection, so chorioamnionitis is when mom has a really bad uterine infection prior to the baby being born. Some preterm moms have this because—we don’t know exactly why they have this, but chorioamnionitis, particularly if it’s invasive, if it’s really severe, that is a risk factor. Also cardiac kids are going to be more at risk, so if you think of the C, kids who have had heart disease or heart malformations, particularly those that are low oxygenation kinds of defects… STEPHANIE: Right. DR. GEPHART: ..and there are some more for C but I don’t recall exactly what those were right now, but I’m just going to stick—oh, culture proven infection. That also goes with C. So if babies have had sepsis, particularly more than once, which sometimes these really early babies do get multiple bouts of infection, that is a risk factor. So that stayed in my model long term. Enteral feeding is definitely a risk factor that all babies are hopefully exposed to because we want them to be fed. That I understand a lot more now about the details of enteral feeding, and that particularly if the enteral feeding is formula, that is very important. We know formula is a high risk factor. There is a whole slew of argument about cow’s milk based fortifiers that go with that as well, so there is some argument about how extensive of a risk factor that is, but formula and enteral feedings certainly. And then the H, I skipped the H. That would be hypotension treated with medicines to bring that blood pressure up. So hypotension is low blood pressure. A lot of preemies have episodes of low blood pressure, but we know that the most sick are going to be hemodynamically unstable which means that their ability to regulate their blood pressure and keep their heart rate within a good level is not quite as solid as a kid who doesn’t have those light fluctuations, so that was a risk factor that did stay. Also race. Race stayed. The experts did not think that race was a risk factor, and they were pretty, if you remember the stages that we used to develop GutCheckNEC, we asked experts about how relevant they thought these risk factors were and they really didn’t think race was relevant. But it was so strong in the model, I couldn’t get rid of it. So if a baby is either black or Hispanic, that puts them at higher risk. Now, the reason for that we think, we don’t really know exactly why that stayed in the model, however, we know that black babies are very much less likely to get human milk… STEPHANIE: Okay. DR. GEPHART: ..than white babies, and that is something we can fix. So that’s really important. As I went through these risk factors that are in GutCheckNEC, I started to separate in my mind what’s modifiable, which is what of these can we do something about and what is non-modifiable? And what I saw really was quite a few of these things were modifiable that stayed in GutCheckNEC. You can do a query online for GutCheckNEC and it will pop up the actual, you’ll be able to find GutCheckNEC in the literature. It’s published so anybody can find it. But the thing that was so interesting to me, and I’m probably going to go off a little bit here, is that the NICU NEC rate consumed a huge amount of the variants in this tool which means that if we were to say that these items explained an infant’s risk for NEC. The NICU NEC rate explains three times as much as gestational age, three times as much as transfusion. So it was so important, and what we saw in the sample, we had 284 NICUs in the sample that we used to build GutCheckNEC and to verify it, of those 284 NICUs, we saw huge variance in NEC rates. So that was pretty concerning, and it wasn’t something that I went into the research expecting or looking for really even because I had read 70 papers about NEC risk, and invariably, they would start with Necrotizing Enterocolitis is a disease that we have very few answers for. We don’t really know why it occurs, but we know that premature babies are at risk and that is the most consistent risk factor across studies. So prematurity. STEPHANIE: Right. DR. GEPHART: Everybody blamed it on prematurity and low birth rate, and very few said anything about—oh, and we know, actually we have about six large studies from 20 years ago that show that unit NEC rate is consistently an issue. So that is something that I didn’t expect to find, but I found, and then I was able to go back into the literature and find other studies that verified it. STEPHANIE: Excellent. That’s a phenomenal amount of information, and I think that’s really great for parents going into the NICU to have in their minds. DR. GEPHART: And I think, I apologize to the parents for throwing out all these terms, but I know that you’re smart, and you can handle it. Okay, I’m just going to give you credit, because if you’re NICU parents, you’re super savvy, and you know how to find information. STEPHANIE: Right. DR. GEPHART: But one of the things we were really concerned about with NEC is how we communicate risk to parents and how parents are really the eyes and ears of understanding what’s going on with that baby just like the nurses are. STEPHANIE: Right. DR. GEPHART: And they are really better situated, honestly, to be able to identify the trends in their own kid, because that’s all they’re worried about. STEPHANIE: Right. DR. GEPHART: They’re not worried about the delivery down the hallway or all these other things, they are the expert. So one thing I’ve been working on trying to frame this message for parents as partners on the team looking for signs of any kind of complication and I think if they know to speak up. To keep track and to speak up if things don’t seem right, and I’ve heard many physicians actually say that it’s the parents indication of concern that will make them stop, and think slower, about what’s going on with that baby. So either the nurses concern or the parents concern, because often the physician, as excellent as they are, may not be right at that bedside… STEPHANIE: Right. DR. GEPHART: ..at that moment when something is changing. STEPHANIE: Right. Right And we did have an experience between Morgan’s surgeries where there was a concern in the NICU, and I can’t even remember who had mentioned it at rounds of attempting to give him—I don’t know if it was formula or breast milk—but giving him something that the surgeon had previously not agreed to—and it was a whole day of me trying to get in contact with the surgeon and making sure that nobody did anything until the surgeon had said yes or no. And he called me back from outside of the surgical room and said if anything like this happens, call me, I will call you back. So we definitely found that the doctors are very receptive, and especially when you raise an alarm, and to give people concrete things to look at for their babies I think is a wonderful tool. So thank you for sharing this. DR. GEPHART: Absolutely! And I can say that within the next few weeks, probably by the time this podcast is released, our website will be active, and on that website are parent materials that we’ve created that are designed to help them. Anyone can download these parent materials, they can use them in their NICU, and they are basically pamphlets to talk about things to watch for, what you can do to prevent NEC, and what the signs are, and a little bit about what happens afterwards. Because you know the first-hand experience of how different your life is… STEPHANIE: Right. DR. GEPHART: ..coordinating care for a child who’s had NEC. STEPHANIE: Right. DR. GEPHART: So the long term impacts of dealing with life after NEC, I know Laura Martin was on the broadcast… STEPHANIE: Yes. DR. GEPHART: ..recently… STEPHANIE: Yes. DR. GEPHART: ..and her story has been such an important part of my development as a nurse scientist. Think beyond just the NICU stay, to think about how NEC impacts these kids forever. STEPHANIE: Right, right, and we’ve been very lucky that Morgan has had (knock on wood) minimal residual effects. We see a little bit, but I mean, I looked at Laura’s story and they are doing a phenomenal job with him. He is a miracle. DR. GEPHART: Yeah, Joseph is pretty awesome. I haven’t had the chance to meet him in person yet, but Laura and I collaborated to write up his story, and that paper is going to be coming out in the next couple weeks in Journal of Perinatal and Neonatal Nursing, and it is a testament to his resilience. STEPHANIE: Right. Hers too and her husband’s and the family’s. DR. GEPHART: It’s pretty awesome. STEPHANIE: Definitely send me those links and we can certainly share that with everyone—direct links in the show episode notes. So I’ll ask you, now that GutCheckNEC is I’ll say standardized if that’s a correct term, is there anything that you’re looking towards in your research moving forward from GutCheckNEC? DR. GEPHART: Well, that’s a great question, and GutCheckNEC is a risk assessment, it’s a tool. It fits on one page. We’ve just gone through a process where we’ve added to it a structured communication protocol, so if a NICU wanted to use GutCheckNEC, we would have them complete a request form, and on one side is GutCheckNEC, and on the other side is the structured communication form, which also clues the nurses, the parents for which signs and symptoms to look for and how to communicate it. So that’s easy. So that’s where GutCheckNEC is going. We’re also trying to combine it with clinical science right now, so that’s the analysis I’m working on right now, and I’ve worked with a great collaborator, Sherry Fleiner from the Inner Health to do that work. But beyond that, one of the things with research, you do a project and then you have these findings and then there is something that just kind of nabs at you and it doesn’t fit like you expected it to. And for us, that was the unit NEC rate component of GutCheckNEC that carried so much weight in the score, and it demonstrated across the 284 NICUs how variable NEC rates can be. So what we did next is we asked the question, well, why are they different? Why are the NEC rates different? And what if we did something to try to standardize prevention care? So there are a couple of main things that prevent NEC. One is human milk—very, very important starting with colostrum for oral care. The other thing is standardized feeding protocols, stewarding antibiotics, and I can kind of get into more detail there, and then there is a lot of controversy about transfusions. STEPHANIE: Right. DR. GEPHART: So those components, those four things plus a strategy for early recognition, we’ve put those components into an intervention we call NEC Zero, and the name of it is designed to convey that we’re hoping to get NEC to zero rate. Now, this is an audacious goal. But why set goals if they’re not crazy? This is an audacious goal, but it was not my idea. There was an editor for Journal of Perinatology, his name is Jonathan Swanson, and he wrote a paper the year that I finished my dissertation, so I think that was in 2012, it might have been 2013, and the title of that paper was “Can We Get NEC to Zero”? And if you ask scientists this and clinicians this, you will hear a lot of concern that this is an audacious goal. Like of course, we’re not going to get NEC to zero, we don’t even know what causes it. However, we do know some things that consistently reduce the risk for NEC. So human milk is, like I said, those five components, but human milk is so primary. So now we’re trying to put those interventions together, make them implementable so that people in the NICU in Delaware could implement them with the same consistency and clarity that people in Texas could do. STEPHANIE: Right. DR. GEPHART: So that bundle of practices is NEC Zero. So the process for NEC Zero right now where we’re at in the project is that we’ve gone through kind of an expert process of refining the recommendations. So we’ve gone through that, we need to publish that, but we’ve got them. We had a really great expert group of almost 20 people, and four of those people were parents. Laura Martin was on that group. So we’ve got the recommendations, now we’re trying to break those recommendations into implementable steps, and we’re creating tool kit products to go with the NEC Zero intervention. So pieces of that are— GutCheckNEC is definitely a primary component of that. Frankly, GutCheckNEC has the least strong evidence of any of the components in the tool kit. But it’s something that is actionable, it’s something that we can use to monitor, and we know that monitoring and evaluation is a key component of implementation success for anything. So that’s where we’re at right now is we’re working on NEC Zero. STEPHANIE: Great, that sounds excellent. Do you have a projection of when people might see this? You said you’re looking to get it published, or the first stages of it getting published? DR. GEPHART: Right. We’re working on refining the recommendations really in terms of publishing any sort of a recommendation list or a guideline. They carry much more weight if you have the authority of a professional organization behind them. So our strategy right now is to try to link up with some professional organizations and see if we can get some endorsements for them. So if any of your listeners are prominent members of the American Academy of Pediatrics, the National Association of Neonatal Nursing, The Academy for Breastfeeding Medicine—any of those groups would be excellent proponents. So we have the recommendations, we have some parent products that will be available, like I said, within a few weeks once our website gets done, and the other pieces of it being available, I will say that we’re testing it right now. So with the testing, there are two things we’re doing. We have the recommendations, we’re asking experts to kind of assign relative importance to the different parts of the intervention, and that score, we’re creating a ten point score for the NEC Zero adherence score, and that’s almost done. And then we’re going to look at relationships between adoption of NEC Zero practices and NEC rates, because we really don’t have a great evidence body for understanding why NEC rates differ so much NICU to NICU. STEPHANIE: Right. DR. GEPHART: So this is kind of an effort to add to that body of evidence of understanding why are they different. We don’t know what we’ll find, that’s the beauty of research is you start with a hypothesis, you get your data, you test your hypothesis, and you see how it turns out. STEPHANIE: Excellent. This is great work, Sheila. I mean, it sounds like it’s really sort of simple, but I’m sure it’s not. DR. GEPHART: That’s right! It does kind of sound simple, doesn’t it? STEPHANIE: Or that it maybe should be simple. Hopefully it will be simple, but it sounds like parents in the NICU could really take this information and be able to be confident in their monitoring of their children and really confident in voicing any concerns that they see. DR. GEPHART: Right. STEPHANIE: So I think it’s great. DR. GEPHART: The challenge is that really statistically you’re not going to have a lot of kids get NEC. Even in a high rate NICU, you’re going to have a lot of babies who don’t get it, and a few babies who do. But the outcomes can be so devastating for those few babies. So the simple part is really important, and the other question is do the interventions of NEC Zero affect other outcomes? And really, the answer is yes, because interventions are things like human milk standardized feeding protocols, antibiotic stewardship—those things are good for any baby— STEPHANIE: Right. DR. GEPHART: Any baby! So the good thing is that any NICU clinician can implement those things with relative confidence. Now, the big wildcard here that people don’t agree to consistently is holding feeding during transfusion. So that piece is a little bit controversial, actually it’s a lot controversial right now, but that component—the health system I’m working with has already adopted a practice to do that, so that is part of our bundle, and we’re going to keep it that way, but as we get into the literature about transfusions and NEC, it is somewhat controversial, and the evidence is not really conclusive. STEPHANIE: Right. We actually had an episode with a Dr. Hussain from Connecticut Children’s Medical Center, and in his conversation about transfusion associated NEC, he had mentioned GutCheckNEC. So it does seem to sort of all circle around. DR. GEPHART: It does, and the thing with GutCheckNEC is that transfusions is a risk factor. So in our structured communications protocol, which is coupled with GutCheckNEC, understanding the context of if a baby has been transfused in the last 48 hours, that’s a trigger. STEPHANIE: Right. DR. GEPHART: So those two pieces put together do heighten our awareness of what a baby could be at risk for. STEPHANIE: This was a really great conversation, Sheila. I really appreciate you sharing all of this. A lot of this, even though I have done a lot of research myself is pretty new in this context to me. So I think it really sort of simplifies some really complicated information. So I appreciate you sharing this with us. DR. GEPHART: Well, it’s been my pleasure and honor to try to simplify things. I have to do that for my own brain. I will say that this is an audacious goal. STEPHANIE: Right. DR. GEPHART: People look at me cross eyed when I say NEC Zero. They think what are you talking about? Is that possible? But I will tell you that there are a handful of NICUs across the country who are getting to zero with their NEC rates, and they are models. STEPHANIE: Right. DR. GEPHART: The things they consistently do are they prioritize human milk feeding, it is critical, they use standardized feeding protocols, they start feedings early with trophic feedings, which is just small feedings, and they generally have a fairly specific approach to handling transfusions and feeding. So those things are very important. But the human milk is essential. STEPHANIE: Right. Right. So before we wrap up, is there anything else with regard to NEC or your research moving forward that you would like to share? DR. GEPHART: I appreciate that offer. I would like to just emphasize how we do have evidence. We have pretty good evidence about things that prevent NEC. Now, does that mean that we’re going to prevent every single case of NEC? I don’t know that yet. STEPHANIE: Right DR. GEPHART: But we have pretty good evidence, and one of the things that’s pretty controversial in our country right now is the use of probiotics. I don’t know if any of your experts have gotten into that realm yet, but- STEPHANIE: We’ve touched on it and they’ve sort of said the same thing you did that it is sort of a controversial topic because if I’m saying this correctly, the FDA regulations and the procedures around that, but I know in other countries that they have seen reduced rates of NEC with probiotics. DR. GEPHART: Right, right, and that is one thing that I would say is certainly controversial. There is one of the NICUs that I’m aware of that uses probiotics. They’ve been at zero for like six years. One of the issues we have, I’ve spent a lot of time lately understanding the strength of evidence for all of these components that prevent NEC, we don’t have randomized control trial evidence for most of them. But we have 24 randomized control trials that show a decreased risk for NEC with probiotics—thousands of babies—thousands, and even some people will say the preparations are different in these different studies, there is a recent study that actually pulled the results from just a certain type of probiotic and they still showed benefit. So the issue here we have in the United States is that probiotics are marketed as a food product. And so as a food product, their regulation is different with the FDA than as a medicine. STEPHANIE: Right. DR. GEPHART: However, I think parents should know this, frankly. STEPHANIE: Right. DR. GEPHART: I think this is one of those opportunities for shared decision making in the NICU where a physician, a nurse practitioner could bring up this issue with parents to say hey, look, we have this opportunity to give your baby probiotics and this is what is available, this is the evidence, this is the risk. See, this is shared decision making. STEPHANIE: Right. DR. GEPHART: You go and you have a test, your physician or nurse practitioner would say this is how you have to decide what’s important, but I think NICU parents are very, very smart people, and I think we’re at the point in the United States where it is time to open up the conversation about probiotics to make it a joint decision versus an “oh, we’re just not going to do it”. STEPHANIE: Right. DR. GEPHART: Because we have such strong evidence, it’s just that most of those studies were not done in the US. STEPHANIE: Right. DR. GEPHART: However, there are many things that have been developed in other countries that we can adopt. The other issue is a standard formulation, a safe, standard formulation. There was a case of sepsis a few years ago that was very concerning—that’s severe widespread infection in a premature baby. That is the risk. So that’s what the clinician would say to the parent. But it’s very, very small risk if you look at all of the benefits. STEPHANIE: Right. DR. GEPHART: So I’m not going to pretend we should be using probiotics, but I do think that parents need to start asking for them. They need to start asking why are we not using them… STEPHANIE: Right. DR. GEPHART: ..because we have such strong evidence. So we have actually stronger evidence for probiotics than we do for antenatal steroids or Surfactant. Those are common, important, consistently delivered interventions for NICU babies. But you have risks, and that’s the issue. STEPHANIE: Right. DR. GEPHART: So we’re at a place for decision making. STEPHANIE: Right. And actually ironically, or maybe not ironically, I know that my boys did get probiotics, and that was five years ago that they were born. DR. GEPHART: That is ironic. STEPHANIE: We had an anomaly with Morgan. Nobody can sort of figure out why he got NEC when he did, but we did do all of the sort of standard care practices, probably even advanced practices for five years ago, and we had one that got it and one that didn’t. So…but knowing now what I have learned is they were doing the very best practices at the hospital where my sons were born. So I think we were at the right place at the right time and had the best outcomes that we could hope for. DR. GEPHART: That’s awesome. That’s awesome. Did you feel like with Morgan that they were able to recognize it pretty fast and act? STEPHANIE: I really think they did. I think that is probably the key that saved his life because he developed NEC at four days old and had really only had two trophic feeds, and it was colostrum. DR. GEPHART: Okay. STEPHANIE: Actually after the conversation that I had with Dr. Hussein, I went back and looked and he did not have a blood transfusion within that timeframe, so he sort of, it’s my understanding he’s just sort of an anomaly, but that’s why we’re looking to the researchers to piece together all of these things. That’s sort of what drives me is he doesn’t easily fit into something that could have, should have, would have, maybe been different and that seems to be the riddle that’s NEC. DR. GEPHART: Sure. There’s an analogy for this it’s called, a wicked problem, I don’t know if you’ve heard of that term, but you were at my talk when we were in Connecticut,… STEPHANIE: Right. DR. GEPHART: ..and I talked about the wicked problem and how it’s like a forest fire, it’s not easily solved. There’s a lot of pieces to it,… STEPHANIE: Right. DR. GEPHART: …and I think NEC is really the neonatal wicked problem. STEPHANIE: Right. DR. GEPHART: So I’m so glad that Morgan got care so quickly and got such excellent care. And that’s the thing is that clinicians, physicians, dieticians, lactation consultants, nurses, nurse practitioners, they want to do the absolute best for your baby. STEPHANIE: Right. DR. GEPHART: Nobody has ill will. This is a team effort, but they’re human, and that’s the thing with wicked problems… STEPHANIE: Right. DR. GEPHART: ..is that you have humans operating in these complex systems, and trying to deal with things and what we know with solving wicked problems, like forest fires, it’s a combination of boots on the ground, and standard protocol. STEPHANIE: Right. DR. GEPHART: So it’s the strength and protection of both approaches that really is effective, maybe not taking away completely the wicked problem, but at least confronting it. STEPHANIE: Right. DR. GEPHART: So I’m so glad that Morgan got such great care. STEPHANIE: Thank you. We are too. We are too. And like I said, I think it goes to show that I’ve heard multifactorial used and all kinds of big words with regard to NEC, and just knowing that there are researchers out there like yourself who are trying to distill this information and simplify it for parents and practitioners as well that this is one of the ways that I think we will get to zero NEC. That’s our goal as well. So I really appreciate you talking to me today, and would love to talk to you again, and any of these links when the website is up, would love to share. So thank you! DR. GEPHART: Absolutely. It would be my honor to share those. It’s been fun to be with you. STEPHANIE: Thank you. You too. Direct links to more information about the GutCheckNEC can be found in this episode’s show notes. In closing, I’d like to share a few thoughts about today’s conversation with Dr. Gephart. Simply put, information is power. I believe that a risk assessment like GutCheckNEC can empower parents in the NICU by distilling complex medical information, and presenting it in a simplified, and actionable way. Morgan was diagnosed with NEC at four days old. My husband and I were still in shock, and hadn’t even begun to come to terms with our twin sons’ unexpected and traumatic birth, when Morgan was transferred to another hospital and underwent emergency surgery. In the days and weeks that followed, I diligently called two NICUs every morning after rounds for updates on our two babies. I took copious notes to share with my husband on weight gains, Oxygen levels, and whatever else each nurse made mention of during the phone calls. And during our daily visits, we spoke with each baby’s nurse personally about all of the day’s happenings. Since then, I’ve learned a lot more about prematurity and NEC. And if we were in the same situation today, I would have a lot more questions to ask about all areas of our babies care. In retrospect, I realize we didn’t know what questions to ask. We took our lead from the nurses, and we looked to them to tell us what we needed to know. GutCheckNEC presents parents the opportunity to learn what questions to ask about NEC. Objectively. And, proactively. And, it can help open up the dialogue between parents and caregivers in advance of potential crisis. Show your support for our smallest and most fragile babies, those who have the greatest risk for developing NEC. Show your support for continued research in NEC. And join our effort to raise awareness about, and funds for research in NEC by making a donation to Morgan’s Fund at morgansfund.org/donate. If you’ve had a personal experience with NEC and would like to share your story, or have a question or topic that you’d like to hear addressed on our show, e-mail us at feedback@morgansfund.org. We’d love to hear from you! Additional Information You can make a donation directly to Dr. Gephart’s research in NEC at the University of Arizona College of Nursing by visiting https://www2.uafoundation.org/NetCommunity/SSLPage.aspx?pid=341 You can become a donor to the College of Nursing by visiting http://www.nursing.arizona.edu/giving/leave-your-legacy Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

Jennifer Canvasser. Photo courtesy of Jennifer Canvasser. Episode 7 features Jennifer Canvasser, Founder of the NEC Society, and Dr. Samir Gadepalli, NEC Society scientific advisory council member. In 2014, Jennifer founded the NEC Society, a non-profit organization dedicated to protecting fragile infants, after losing her son, Micah, to Necrotizing Enterocolitis. During the episode, Jennifer and Samir share the findings from the NEC Society’s survey aimed at characterizing parent perceptions of the practices and events related to their child’s development of NEC. They discuss: The design and development of the NEC Society’s online, international survey—research specifically focused on parents and their perspectives on NEC, The survey’s five areas of interest: education, awareness, support of human milk, information provided and information providers, and parental empowerment in the NICU, The survey findings including the demographics of the participants and their babies—all of whom were diagnosed with NEC, The importance of raising awareness about NEC in the general public, The NEC Society’s partnership with the Best for Babes Foundation® and the Miracle MilkTM Stroll, and The NEC Society’s recently announced conference, Necrotizing Enterocolitis Symposium: A Transdisciplinary Approach to Improved NEC Outcomes, in partnership with the University of California at Davis, and set for 2017. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. [powerpress] STEPHANIE VAUGHAN, HOST: Welcome to Episode 7 of Speaking of NEC—a free, audio podcast series about Necrotizing Enterocolitis. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org. Hello, my name is Stephanie Vaughan. Welcome to the show. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. Today, my guests will be Jennifer Canvasser, Founder of the NEC Society—whose mission is reducing the incidence of Necrotizing Enterocolitis through education, outreach, research, and advocacy, and the NEC Society scientific advisory council member Dr. Samir Gadepalli. During our conversation, they will discuss in varying degrees: The design and development of the NEC Society’s parent survey—research specifically focused on parents and their perspectives on NEC, The survey’s five areas of interest: education, awareness, support of human milk, information provided and information providers, and parental empowerment in the NICU, The survey findings including the demographics of the participants and their babies—all of whom were diagnosed with NEC, The importance of raising awareness about NEC in the general public, The NEC Society’s partnership with the Best for Babes Foundation® and the Miracle MilkTM Stroll, and Plans for their upcoming conference Necrotizing Enterocolitis Symposium: A Transdisciplinary Approach to Improved NEC Outcomes in partnership with the University of California at Davis. With that in mind, let me introduce my guests today. Hi, Jennifer and Samir. Thank you for joining me. How are you guys? JENNIFER CANVASSER, GUEST: Great. Thank you. SAMIR GADEPALLI, GUEST: Great. Thank you. STEPHANIE, HOST: So let me have Jennifer take a few minutes and introduce herself. She’s got a very compelling story with her son Micah, and has done some wonderful work based on a tragic situation with Micah, so let me have you share your story. JENNIFER, GUEST: So, my name is Jennifer Canvasser, and in January of 2014, I founded the NEC Society. It’s a nonprofit dedicated to the prevention of Necrotizing Enterocolitis in fragile infants. And, it was because my son Micah passed away from complications related to Necrotizing Enterocolitis when he was 11 months old. And so really, the organization is dedicated to reducing the incidence of this devastating disease and making progress to bring families, clinicians, and researchers together to collaborate and make improvements on protecting babies and families. STEPHANIE, HOST: Excellent. Thank you. And Samir, can you talk a little bit about your experience with NEC from the surgical perspective, and how you came to know Jennifer and get involved? SAMIR, GUEST: Yes. So, I’m Samir. I’m one of the pediatric surgeons at Mott Hospital (C.S. Mott Children’s Hospital). I actually had the privilege of taking care of Jenn and her kids, and that’s how I met them. In fact, her husband Noah rotated on our service when he was an intern, and so I got to know the whole family in different aspects. For me, my experience with NEC really is related to the fact that as a pediatric surgeon it’s one of the things that you see a lot of, and it’s a very devastating disease and somewhat frustrating because outcomes are fairly miserable and you just wish there was a better way of handling this. There really hasn’t been a huge difference in‚—depending on who you ask‚—30 or 50 years. And so as a junior faculty member, one of the areas I had primary interest in was in Necrotizing Enterocolitis, and ways to approach it in a different way, because whatever we’d been trying for 30 or 50 years definitely hasn’t worked. I shouldn’t say that. I would say there’s been some progress, but the reality is it’s not as much as you would like it to be. And so, one of the opportunities that came up was when Jenn called me one day and said, “Hey listen, I was interested in starting a society focusing on NEC, empowering and educating families.” I said, “This is fantastic. This is exactly what I was looking for.” And so both of us kind of talked over the phone, and I sent her various ideas that I was thinking about and ways that I was hoping to approach it, different than it’s been approached before in terms of collaboration, and empowerment, and bringing different ideas together. And so, both of us talked about ways that we can get other people involved, not just clinicians but also researchers, parents. And she did all the legwork in terms of the NEC Society, and getting all these various members across the country on board who are all experts and are invested in solving the problem of NEC. And so, both of us wanted to try to invigorate the group and get them to start focusing on ways to work together and collaborate, so one of the things that we realized is one of our opportunities was to try to get a survey going and also to‚—how do you get a bunch of researchers to work together is research. That was a chance for us to motivate people in our group, and to start thinking of ways to approach the disease that hadn’t been done before. STEPHANIE, HOST: That’s great. So, can you talk to me a little bit about how the survey was actually designed, and maybe the major components or question topics? SAMIR, GUEST: Sure. What we did was we wanted to survey all the family members because we had access to over 200 parents across not just this country, but internationally, who all had an experience with NEC, various different types of approaches, different experiences and outcomes. We wanted to survey both demographics and see what kind of population we had, and also look at what their experience in the NICU was in terms of what kind of education they were provided, how much empowerment they had in decisions, who provided the education, what did they know about it beforehand, what kind of awareness existed, and so forth. And then we wanted to see if there was something that we could learn from and we can focus on in the future for our society to work on. I created a design, but then I showed it to Jenn to see if this is something, one, that’s easy to take and feasible and can be done within a few minutes and wouldn’t be inconvenient; it wouldn’t create any sort of PTSD (Post Traumatic Stress Disorder) for families who’ve been through a very traumatic experience. But also, we wanted to make sure we highlighted areas that we thought the families could access, and so there were quite a few open-ended questions within it. We didn’t want it to be cumbersome but it get enough data that we could use. Sheila Gephart (PhD, RN, from the University of Arizona College of Nursing) is someone who has a lot of experience using qualitative data and looking at Necrotizing Enterocolitis, and she played a valuable role in terms of the information we were trying to collect. Dr. (Jae) Kim, from (The University of ) California, was also very useful because he has a ton of experience treating patients with Necrotizing Enterocolitis. Between the four of us‚—Jenn, myself, and those two‚—we created the survey. We went over it with our scientific advisory council to make sure that everyone was in agreement with the type of questions we asked. Then we just sent out the survey via email, and our response rate was amazing. Pretty much everyone who got the‚— they were invested in it, and that’s one of the reasons why they decided to join NEC, I think, the NEC Society, was because they wanted to make a difference and let their voice be heard. STEPHANIE, HOST: Right. JENNIFER, GUEST: I think it was really empowering for the families who had been through these traumatic experiences that Samir is talking about to be able to have their voice heard, like he just said. They found it very empowering to share their experience with the hope of helping future families. STEPHANIE, HOST: Right. Right. So can you talk to us about what you found in the study specifically? SAMIR, GUEST: Sure. I think in order to really understand the study you have to start out with the demographics of the population. I think Jenn has the numbers right in front of her. I was trying to bring it up on my computer. But basically, it’s highly educated, mostly Caucasian, but college graduates who were part of this society, so they were online, and they had an interest and investment. They already had a lot of education and background. When you look at the study, you kind of think, okay, so here’s a population that has a lot of exposure and experience in life and should probably know a lot about NEC. This is a disease that affects a lot of premature infants. But then when you look at the data, when we went through it, it was kind of like pretty sad in terms of what it showed in our different healthcare systems. It wasn’t just us, as in United States, or us in Michigan or us in anywhere. It was internationally. It shows you how not-so-good we are at educating families and empowering families. Jenn, you want to comment? JENNIFER, GUEST: Yeah, I just want to add something else that’s very interesting is that nearly 90% of the children of these parents who responded were born after 2010, and so this is a very recent occurrence. STEPHANIE, HOST: Right. JENNIFER, GUEST: So and so this wasn’t 15 to 20 years ago. This is happening now—in NICUs now. So I think it’s important to note that. STEPHANIE, HOST: And do you want to talk to any of the specific measurements that you saw, or any topics that were maybe better than others, or ones that specifically need more improvement? SAMIR, GUEST: We focused on five primary areas that we thought were important for us to hit. One of them was education. One of them was awareness. One of them was support that was provided in terms of using human milk or breast milk. One of them was regarding who provided information and what information they were given. And one was related to empowerment within their NICU experience. We found that they were predominantly‚—the kids were mostly 28 weeks gestational age, and 90% of them were less than 1800 grams (3 pounds 15.5 ounces). The majority were treated in a pediatric unit within an adult hospital, 55% of them, but about 25% of them were at a free-standing children’s hospital. And then the geographic distribution was pretty diverse, from all regions of the United States. About 12% of them were international. Many were treated at multiple centers, transferring to a higher level once NEC was diagnosed. They were diagnosed at median age of 31 weeks, so about 3 weeks of age. And the survival rate was about 64%, and about 71% had surgery. And of those survivors, about 44% of them had short bowel syndrome. Of those who passed away, about 60% of them were in the first month of life. So, it’s kind of a heterogeneous group, but pretty much the major outcomes that you would expect with NEC were seen. STEPHANIE, HOST: Okay. SAMIR, GUEST: About 15% of them worked in the medical field, and so when we looked we said, okay, so they may know a lot about the disease, but we found out that about 40% of the parents were informed only after the baby was diagnosed with Necrotizing Enterocolitis. And 23% of them felt that no information was actually provided about NEC. So, most of them were not satisfied in the amount of information that was provided. Only about a third of them thought they were pretty satisfied. These are much smaller numbers than we had hoped for. In support for breast milk, there was a huge variability. About 84% of the parents met with a lactation consultant after the baby was born, and about 60% on the first day. However, about 10% of them were never offered an opportunity to meet with a lactation consultant, and only 5% of the patients met with a peer counselor for lactation support. So, I think there were some areas that we did okay, but there were a lot of areas that we can work on. STEPHANIE, HOST: Um-hmm. SAMIR, GUEST: About three-fifths of the babies received donated milk, but many of them didn’t even know about the existence or weren’t even told about it. About 30% of them felt they felt pressured to give their baby formula. The surprising thing is more than half of the parents, about 54%, felt that their child’s Necrotizing Enterocolitis was preventable. And many of them, of those who developed short bowel syndrome, felt this way. STEPHANIE, HOST: Oh, wow. SAMIR, GUEST: About 56% of the parents suspected that something was wrong prior to the diagnosis of NEC, and all of them notified the medical staff except for one of them, but in less than half of the instances was anything ever done. And you have to realize, this is broad. It’s not like we picked on one institution or one region of the country… STEPHANIE, HOST: Right. SAMIR, GUEST: …or we picked on a population that was not well educated or had poor socioeconomic status. This is after 2010, and this is a population that’s well educated, that has access to Internet and is willing to provide feedback, and is an empowered community. STEPHANIE, HOST: Right. SAMIR, GUEST: This doesn’t even reflect the population of NEC. STEPHANIE, HOST: What would you want to say to the parents that are listening, questions that they should be asking, and things that they should be looking for when they’re in the NICU? JENNIFER, GUEST: Right. We actually have, if you just Google, “10 Things All Parents of Preemies Need to Know.” When we developed this, we really had NEC in mind, but you can generalize it to any fragile infant, or any hospitalized child, for that matter. But specifically for babies that are at risk for NEC, this “10 Things All Parents of Preemies Need to Know” is very helpful, and it talks about asking questions and being involved in the care team, the importance of an exclusive human milk diet. We often hear a lot of families say, “Well, my baby did get breast milk,” but the breast milk is often fortified with formula, and we know that formula does increase the risk of NEC. So just making sure that they’re involved, and their voice is being heard, and they’re developing a primary care team. There’s some things that I hope people will check out, again, “10 Things All Parents of Preemies Need to Know.” Those are kind of the biggest things, and one of the other goals that we have for the NEC Society is to raise awareness for families who are not in the NICU right now, because even in my own personal experience there are many families who aren’t in the NICU now, but they’re going to end up in the NICU five years from now, or whatever it might be, or they have friends that are. Necrotizing Enterocolitis is one of the leading causes of overall infant mortality in the United States. It kills about 500 infants each year, but practically no one knows what NEC is until it happens to them. STEPHANIE, HOST: Right. JENNIFER, GUEST: And we’re really hoping that we can work to change that and raise awareness just in the general public, because I think when you raise that awareness in the general public there’s more at stake and more people are invested in making a change and protecting these babies and can put more resources and finances and more energy into preventing this disease and reducing the outcomes. STEPHANIE, HOST: Right. Yeah, we couldn’t agree more. And I think you guys have taken a wonderful avenue. Ours is probably the flip side in looking at how we can help advance research through funding and that area. I’ve been on your website and have been following you, and I think you guys are doing wonderful things. JENNIFER, GUEST: Thank you. And same to you. STEPHANIE, HOST: Oh, thank you. Anything that you would like to share about other things that you are doing, or other points study related or not, please feel free. JENNIFER, GUEST: Do you want to mention anything else about the survey and the research, Samir, before we get into other topics? SAMIR, GUEST: In terms of the survey, we presented at different forums not for recognition per se as much as just awareness and creating that there is a need here, that partnering with parents and partnering with decision makers is not commonplace in medicine in general, but yet this is an area where we think it’s super key to do, because I think that access to donor milk or access to human milk is a priority in a lot of these babies, and there’s probably a lack of awareness overall. And improving quality in our NICUs is going to be through better communication and teamwork with families, early education engagement of families rather than just waiting until a disease happens, because I think a lot of parents don’t quite realize how much power they do have, and how much control they do have over the outcome of their child. JENNIFER, GUEST: We are hoping that we can eventually get this published and share more of the results and the information and just get this information out there and use it to help better the practices in other hospitals for other families. So we’re not done, basically, with the work. We’re hoping to continue the momentum and continue to use what we have learned to improve practices. And then, the other thing I wanted to mention is over the past couple of years, we have partnered with and organization that’s fantastic. It’s called the Best for Babes Foundation. They have dedicated what’s called a “Miracle Milk Stroll” to raising awareness about the life-saving power of human milk for fragile infants. Studies have shown that an exclusive human milk diet for fragile babies can reduce the incidence of NEC by nearly 80%, yet many, many NICUs aren’t providing donor milk, and many institutions are not telling families how important it is to provide human milk. And so families are in a very difficult situation when you’re having a premature baby, and if you’re too overwhelmed to pump or you’re at a different hospital than your baby and you can’t get them your own milk, how important donor milk can be. Basically, we’ve partnered with the Miracle Milk Stroll with the Best for Babes Foundation to, one, raise awareness just through the general public, and it’s really been amazing to see the media coverage of this event, because it’s become international with hundreds and hundreds of locations all around the country and even internationally who together stroll in honor of these babies and raising awareness about the life-saving power of human milk. So one is to raise awareness in the general public. It’s also to increase human milk donations to milk banks. Because again, these babies need donor milk if their mothers aren’t able to provide it. And then, it’s also a fundraiser. So, it’s raising funds to help, again, protect these babies and making sure that they are getting access to the life-saving milk that they definitely need. So that’s one thing that we’re really honored, and so proud, and excited to be able to do, so we’ll be doing that again. It’s in the spring, kind of around May of each year, so we’ll be doing that again next year. It’s called the Miracle Milk Stroll with the Best for Babes Foundation. Another project that we have just started working on is the first conference on Necrotizing Enterocolitis in the United States. We just received an award from PCORI to host this conference. It will be in the spring of 2017 in conjunction with UC Davis in northern California. And it’s going to be a collaboration, again, between families, clinicians, researchers, and others who are dedicated to reducing this disease, and it’s going to be focused on prevention and just improving outcomes, so we’re really excited about that. And, Samir, please feel free to add anything you might want to about the conference. SAMIR, GUEST: Sure. Stephanie, consider yourself invited. STEPHANIE, HOST: Thank you. Yes, congratulations. SAMIR, GUEST: I think it’s an exciting first step because I think just getting people together to talk, and share all their ideas, and collaborate is going to be a huge step in the right direction. And this is our chance to put everyone on the same forum, on the same table, and just say, “You know what, these conversations need to happen.” JENNIFER, GUEST: Right. SAMIR, GUEST: I think a lot of the issue right now is the funders are on one page, researchers are on one page, clinicians are on one page, and the families are nowhere on the table. I think this is kind of a loss at how our system works right now. And this is our opportunity to bring everybody together and talk about the different ideas and what they’re working on and say, “Hey, this has hope. This has potential. We should start focusing on this as a group and have larger clinical trials.” This is what they did with cancer 80 years ago. This is what we should be doing with all other diseases, and yet NEC is not even on the map. And so, finally, we have a chance now, and PCORI has given us a chance to fund us to make this symposium happen. We’re planning on doing it in 2017 in northern California, like Jenn mentioned, and our hope is to get all different parties together‚—researchers, clinicians, anyone invested in NEC‚—to talk about the various issues, whether it’s related to prevention, management, outcomes, way to improve those. I think it will be a great chance. JENNIFER, GUEST: And I was just going to clarify really quick, PCORI stands for‚—and I want to make sure I’m saying it right‚—Patient-Centered Outcomes Research Institute, for people who are not familiar with PCORI awards. STEPHANIE, HOST: Well, congratulations again. I can’t imagine the work that went into trying to get that grant, and I think it’s a wonderful thing. And we will definitely be there, and support in any way that we can. JENNIFER, GUEST: I think that it’s just important to know that people like your organization and our organization exist, and we are trying to improve things for families and for babies, and that there is hope that things are hopefully going to be improving, and that there is a lot of room for improvement. I think that’s one key for hospitals and clinicians and NICUs, what have you, to understand is that there is a lot of room for improvement. STEPHANIE, HOST: Right. JENNIFER, GUEST: And I think that’s one thing that this survey really opened our eyes to. Parents have been saying, “I didn’t feel empowered. I feel like my baby’s NEC was preventable,” and now we have this information that really shows that, yes, there’s a lot of room for improvement, and we have these organizations out there that are working on doing just that. STEPHANIE, HOST: Right. Right. And I was amazed when we first started, at finding how many researchers and doctors have dedicated their careers to this disease. JENNIFER, GUEST: Right. STEPHANIE, HOST: And unfortunately, no one outside of that tiny community knows about it, or knew about it. JENNIFER, GUEST: Right. STEPHANIE, HOST: So just like you said, getting everyone in the same place at the same time, I think will be a phenomenal step forward. For more information about the NEC Society visit: necsociety.org. A direct link can also be found in this episode’s show notes: http://necsociety.org/ In closing, I’d like to share a few thoughts about today’s conversation with Jennifer and Samir. As the parent of a surgical NEC survivor, two things struck me about the findings of the NEC Society’s parent survey. First, the findings of this survey are extremely relevant because the parents’ perspectives are so very timely. As Jennifer pointed out, survey participants were parents of babies born in 2010 or later. So, these parent perspectives reflect current NICU practices as they relate to NEC. The fact that “54% the parents felt that their child’s Necrotizing Enterocolitis was preventable” is not only heart wrenching but also, in my opinion, wholly unacceptable. The second critical point that Jennifer made is that NEC prevention needs to start with the general public: before a baby who’s at risk for developing NEC is born, before they and their parents enter the NICU. We need to create an awareness of NEC among this next generation of parents. We need to create opportunities for education about NEC before they find themselves in the position of being the parents of a baby who’s at risk for developing NEC. I recently met a new mother of twins who were born at 34 weeks. She delivered her babies at a prestigious children’s hospital, and they spent two weeks in the hospital’s nationally ranked NICU. And, she never had heard of NEC. We’re fast approaching the tipping point. In the U.S., NEC is the second leading cause of death in premature infants, and the 10th leading cause of infant death overall. (Sources: UC Davis Health System and CDC/NCHS). We need to create an awareness about NEC through which we can educate and empower parents, and advance research for a cure. Show your support for our smallest and most fragile babies, those who have the greatest risk for developing NEC. Show your support for continued research in NEC. And join our effort to raise awareness about, and funds for research in NEC by making a donation to Morgan’s Fund at morgansfund.org/donate. If you’ve had a personal experience with NEC and would like to share your story, or have a question or topic that you’d like to hear addressed on our show, e-mail us at feedback@morgansfund.org. We’d love to hear from you! Additional resources: NEC Society. Perspectives from parents of infants impacted by NEC: NEC communication in the NICU. Poster presented at: Vermont Oxford Network Annual Quality Congress. 2014 Nov 1-2; Chicago, IL. About Jennifer Canvasser: Jennifer Canvasser has served on the Ecology Center’s children’s health, first food and environmental health campaigns since 2010. She completed UCSF’s Reach the Decision Makers Fellowship program in 2011, with a focus on reform of our national chemicals law. In 2014, Jennifer founded the NEC Society, a non-profit organization dedicated to protecting fragile infants, after losing her son, Micah, to necrotizing enterocolitis. She is a regular contributor to The Huffington Post on parenting, health and food justice issues. Jennifer completed her undergraduate studies at U.C.L.A. and earned her Master’s in Social Work from the University of Southern California with a focus on community organizing. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

Laura Martin. Photo courtesy of Laura Martin. Episode 6 features Laura Martin, expert parent, mom blogger at Joseph at Home, and the Director of Parent Communication and Engagement at Graham’s Foundation—a non-profit organization that supports parents of premature infants. During the episode, Laura shares her son Joseph’s story of prematurity and survival including his near fatal bout of late-onset NEC and the multitude of life-long complications that have resulted. She discusses: The extremely premature birth of her twin sons, Joseph and Campbell, at 24 weeks—four months early, and Campbell’s passing at 23 days of life, How Joseph developed late-onset NEC and lost two-thirds of his small intestine, Several of Joseph’s secondary diagnoses including Short Bowel Syndrome, Auditory Neuropathy Spectrum Disorder, Eosinophilic Esophagitis, and multiple food allergies—all resulting from NEC, How hers and her family’s experience with prematurity led to her work at Graham’s Foundation, Her personal blog where she documents her daily life as an expert parent of a child with special needs. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. [powerpress] STEPHANIE VAUGHAN, HOST: Welcome to Episode 6 of Speaking of NEC—a free, audio podcast series about Necrotizing Enterocolitis. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org. Hello, my name is Stephanie Vaughan. Welcome to the show. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. NEC is the leading cause of Short Bowel Syndrome or Short Gut Syndrome. The amount and location of intestine lost can result in life-long medical complications. Up to now, we’ve discussed NEC and its most common complication from the perspective of the neonatologist or surgeon. However, I feel that it is equally important to share the parent’s perspective. I’m privileged to have one such expert parent as my guest today. Laura Martin is the mom blogger at Joseph at Home, and the Director of Parent Communication and Engagement at Graham’s Foundation. She is also the parent of a fellow surgical NEC survivor. Laura will share with me today her son Joseph’s story of prematurity and survival including his near fatal bout of late-onset NEC and the multitude of life-long complications that have resulted. During our conversation, she will discuss in varying degrees: The extremely premature birth of her twin sons, Joseph and Campbell, at 24 weeks—four months early, and Campbell’s passing at 23 days of life, How Joseph developed late-onset NEC and lost two-thirds of his small intestine, Several of Joseph’s secondary diagnoses including Short Bowel Syndrome, Auditory Neuropathy Spectrum Disorder, Eosinophilic Esophagitis, and multiple food allergies—all resulting from NEC, How hers and her family’s experience with prematurity led to her work at Graham’s Foundation, Her personal blog where she documents her daily life as the parent of a child with special needs. With that in mind, let me introduce my guest today. This is Laura. Hi, how are you? LAURA MARTIN, GUEST: Hey, good. How are you? STEPHANIE: Good. Thank you for joining us. And Laura is a blogger at Joseph at Home and the Director of Parent Communication and Engagement at Graham’s Foundation. So I will let you introduce yourself and talk to me a little bit about your experience with prematurity and Necrotizing Enterocolitis. LAURA: Yeah. Our twin boys were born at 24 weeks gestation on Halloween morning in 2009. It came as a big surprise. It had been a perfectly clean, normal pregnancy. I had just had an appointment three days before, woke up with a dull backache about midnight. And Joseph was born first at 7:41 and his twin brother Campbell at 7:42. No rhyme or reason for the prematurity. It just happened. Campbell, unfortunately lost his battle to prematurity after 23 days of life. He just had a lot of complications from prematurity that he just couldn’t have overcome. Joseph went on to spend 228 days in the neonatal intensive care unit before he came home. He is now five and a half. He just started kindergarten. But it’s been a long journey to get here. We were two days from coming home when he was 5 and a half months old. He was about eight weeks adjusted. We had everything set up at home. We had oxygen. We had G-tube equipment. We had everything. We were ready. His room was ready. All of the clothes were washed. Two days before discharge, we got a call from the NICU that he was gray and bloated. And they were putting him on a ventilator. Let me back up a little bit. A few days prior to that, he had been showing some signs of infection. But nobody really knew what it was. He just had vaccines. He was running a little bit of fever. We contributed it to that. This pushed discharge back a little bit. But just two days before the initial discharge, when they called and said he’s gray and bloated, and they were putting him on a ventilator. You need to get here immediately. Our world kind of turned upside down, because we thought we were two days from home. And here we were not knowing what was going to happen. This was a Saturday, the day before Palm Sunday, 2010. And we didn’t know what was going to happen. The doctors kind of watched him throughout the Saturday, were taking X-rays every few hours. A little bit after lunch that day, one nurse practitioner came and said, his X-ray looks a little bit like NEC. Do you know what that is? And we said, of course, we know what that is. We’ve been in the NICU five and a half months. But he’s eight weeks adjusted. Why would be looking at NEC? We’ve been told once you get to your due date, you cross that off your list of things to worry about. And so, as the day went on, the night went on, it became very evident that he had Necrotizing Enterocolitis. They had seen this one other time in the NICU with a baby this old. He went through Saturday night. Things were not looking good. And on Sunday morning, the surgeon came to us and said, I’m going to take him to the OR. I’m going to open him up. And I’m going to see what happens. We don’t know what we’re going to find. So, on Palm Sunday, 2010, the surgeon took him to the OR. He was gone for several hours and came back halfway through surgery and sat us down in a room and said, here’s what I found. He has 41 centimeters (16 inches) of salvageable intestine. He said, he has 28 centimeters (11 inches) below his stomach, and he has 13 (5 inches) above his colon. Everything else in the middle is completely gangrenous. He said, we can take out the gangrenous intestine. And he’ll have two stomas for a while. Then we’ll go back in and reconnect. But he also looked at us and said, we don’t know what life for him is going to be like. It’s probably going to be very rocky. He may die before the age of two waiting on a liver transplant, because he’s going to be TPN dependent. If you want to close him up and let him go, I’ll respect your wishes. And, of course, we looked at him and said, no way, we’ve gotten this far. We’ve already lost one kid. We’re not doing this again. Go in there. Do what you have to do and save his life. So he went back. He was gone for several hours, came back to us. We saw Joseph, and it was amazing. Even though he had stomas, and he had just lost two thirds of his small intestine, he looked so much better than he had right before he went, because the infection was gone. A few days after that, they went in and placed a central line, because he was, of course, totally TPN dependent. He already had a G-tube before NEC, because of aspiration to his lungs. So we were fortunate with that that he already had the G-tube. But, as the weeks wore on, they were able to slowly decrease TPN, increase feeds, and decided after four weeks, he was ready for intestine reconnect, which was shocking. Nobody expected after four weeks he would be ready for intestine reconnect. So four weeks later, they went in, reconnected the intestines, told us we would probably be in another two to three months. He again amazed everybody—came off TPN very quickly, increased G-tube feeds to the point that they pulled his port before he came home. He never came home with a central line. And four weeks after his reconnect surgery, he came home—after 220 days in the NICU. STEPHANIE: That’s amazing. LAURA: So that’s how NEC came to be. Again, the hospital had seen one case of that. And it had been years and years and years. And people say, are you sure it’s NEC? Are you sure it was NEC? Yes, pathology confirmed that it was NEC. But who knows? Who knows why he had it at five and a half months old. STEPHANIE: Right, right. So just to back up, I’m curious what you knew about NEC before his surgery. You know, you had said that you had been in the NICU for now almost five months. And he reached his due date, so you were crossing it off the list. So I’m just curious, in general terms, what you knew up to that point. LAURA: NEC was one of those things that I remember learning about really early on in our NICU stay. Having 24-week twins, we knew that it was a very rocky journey. They both had less than 50% chance of survival. But my husband and I were the type that we wanted to know everything. We wanted to know what are things we have to look out for. What are things we need to be worried about? What are things that we don’t have to worry about? And it was within the first 24 to 48 hours that the nurse said there’s a thing called Necrotizing Enterocolitis. It doesn’t happen a lot. But it’s one of these things we watch for. We stay on top of it. So we knew about it from the beginning, but we had always been told that once you reach the gestational due date, you didn’t have to worry about it anymore. And while that is so true 99.999% of the time, there is a very small chance that it can happen later. And it’s almost one of those things I wish we had never been told—oh, yeah, you don’t have to worry about it when you hit 40 weeks. Because we did—we had completely crossed it off Right. So we know about it. And we knew what the warning signs were. We knew what to look for. Yet, again, when we look back on it, he had some of these warning signs two to three days before he got really, really sick. But why would—none of us thought it could be NEC. We thought, well, he’s had some GI issues. He has the feeding tube. He’s had his vaccines. It could be any other bug he’s picked up. He’s still in the NICU. But we knew what it was, but it was still just a huge shock that—I mean, he was 13 pounds at that point. He was a big kid, you know, for being in the NICU. STEPHANIE: Right, right. So he came home now, you said, four weeks after he had been reconnected. So talk to me a little bit about, I guess, those first days and first months when he was coming home—you know, again, sort of thinking from the perspective of things that we want to let parents and caregivers know, questions to ask, sort of things to look out for—so anything that you want to talk about, you know, his transition home and getting settled. LAURA: Yeah, he came home on complete continuous feeds via G-tube. So he was on feeds 24 hours a day because, of course, having NEC left him with short bowel syndrome. So he had a lot of dumping episodes, where it was out of control at times. We couldn’t really go anywhere because of the dumping syndrome. As the days went on, the weeks went on, the months went on, that got a little bit better. We were in and out of GI every 8 to 12 weeks, just checking in, making sure he was gaining weight. But a lot of doctors also didn’t really know what to do because he wasn’t TPN dependent. A lot of kids who come home with short bowel syndrome are TPN dependent. But here you have this kid who has only a third of his small intestine, but for the most part he’s tolerating formula well. He’s tolerating G-tube feeds. He’s gaining weight. He’s not going to need a port. Everybody was convinced he would have to have his port put back in. He never did. So that was actually, to be honest, a frustration for the first several years, is finding doctors who understood that, yeah, he is doing well. But he’s also not doing well. He only has a third of his small intestine. His weight gain is very slow. He still has periods of severe pain even today, from school. He still has periods where his belly is very distended. It took some time to find doctors who really wanted to help and say, yes, there really is still a problem here—with a kid who only has a third of his small intestine. That first year that he was home, he was rehospitalized five or six times, most of those with a GI bug. If he got any sort of stomach bug, we were in the hospital, because his body just couldn’t handle it. And so we were back in. Usually it would lead to a respiratory infection. He would spend a good week, 10 days, in the hospital. That was the first year. After that, I quit my job teaching, because we knew he had to stay home. He had to be healthy. And he had to grow. And as he’s gotten bigger, he’s gotten healthier. He has not been in the hospital for a GI bug in 3 and 1/2, 4 years. It’s been awhile. STEPHANIE: Oh, that’s great. LAURA: Yeah, now his body can tolerate it. You know, it’s not pleasant still. But we know what to do. But, as he’s gotten bigger, it’s gotten better. So, yeah, that was the first few years out of the hospital. STEPHANIE: We don’t have nearly the after-effects, but I remember Morgan’s transition home was pretty chaotic. LAURA: Yeah. STEPHANIE: His brother came home after 85 days, and I’m guessing was a much simpler transition, even just holding him in hands-on care and changing diapers. Morgan was very traumatized, I think, from being in the hospital and having the surgery. And we saw a big, big difference between him and his brother. So it was very scary as a parent that even simple things that you have to do was traumatizing to him. LAURA: Right. And then they can’t communicate with you to tell you that. And that’s what was so hard to watch early on, was you knew he was hurting. You knew he was in pain. But I didn’t know what to do to help, you know. So that was hard. Yeah. STEPHANIE: So, I guess, now that he’s getting a little bit older—you said he started kindergarten. That’s great. So how is he doing, I guess, developmentally? And are you seeing anything—you know, secondary diagnoses, I guess, maybe, strictly because of NEC or because of the short bowel or other issues that he’s having? LAURA: Yeah, he has several things that are going on. He did just start kindergarten. He’s in a special needs kindergarten. As a result—well, when he had NEC, he had to receive Gentamicin, which of course is an ototoxic drug. And the surgeon said, if we give this to him, he will probably lose all of his hearing. But if we don’t give this to him, he’s not going to live. Well, of course, it was a no-brainer decision. Before that, he had not passed his newborn hearing screening. But a lot of preemies don’t. So we kind of thought, well, we’ll get out of the NICU, he’ll pass it. He never did. While he was still in the NICU—this was in between NEC and the reconnect surgery—he was diagnosed with Auditory Neuropathy Spectrum Disorder, which is a hearing loss that comes and goes. It’s almost like you’re trying to tune a radio and there’s static. And that was what his hearing was like. So he received his first cochlear implant when he was three—three months after he turned three—because his hearing was rapidly deteriorating in his left ear. Just, not even two weeks ago, he received his second cochlear implant in his right ear. And we always go back to say, his hearing probably would have never been that great. But it’s definitely a lot worse post-NEC, because he had to receive the Gentamicin, the ototoxic drug, in order to kill the bacteria. Some other things that he has—July of 2014, he was diagnosed with Eosinophilic Esophagitis, which has been in question for several years. And we could not get the GI doctor to agree to do an endoscopy. He hated to do the endoscopy, because it meant putting him under sedation. Due to asthma, he didn’t want to do that. But at the same time, we’re battling with this increased amount of food allergies, knowing that that has to be a problem. Finally, they agreed to do the endoscopy. And it was clear that he had Eosinophilic Esophagitis. As a result of that, he has 15 food allergies. I’m happy to list them all if you want. But it includes all of the top 8 plus beef, chicken, rice, potatoes, watermelon, strawberry, pineapple, and a whole slew of medications. And I always tell people asking—it’s hard to know whether he would have had that regardless. Probably not. But having the Short Bowel Syndrome made it worse. He would not have had Short Bowel Syndrome if he didn’t have Necrotizing Enterocolitis. So to me it’s all sort of related. STEPHANIE: Right. Right. There’s definitely a domino effect. LAURA: It’s a domino effect. One thing has led to the other, which has led to the other. So it’s hard to know, some days, if you’re battling GI issues because of Short Bowel Syndrome. Or are you battling GI issues because of the Eosinophilic Esophagitis? Or are the white blood cells growing because he’s eating something he’s allergic to? Is there a new allergy? So some days we really struggle knowing what is what. And then you’ll have periods where he does great. And he’s like a normal kid. He does still have a G-tube. We were told he would lose the G-tube by two. But here we are almost six, and we still have the G-tube. Many days I wish we didn’t. But there are many days we couldn’t do without it. And if he doesn’t feel like eating or he’s in pain, we have the G-tube. And it’s literally been a lifesaver. And if he’s been sick, we can always get fluids in him. I would love to see it go. But I don’t see it going any time in the future. He doesn’t know life without it. He’s had it since he was four months old. To him it’s second nature. He gets his G-tube feeds at school. He gets them at home. They travel with us. But it’s truly a lifesaver for him. But it helps him gain weight. It’s what helps him actually be on the growth chart as a short-bowel kid. Many short-bowel kids, I think, are failure-to-thrive. He has never even been remotely considered failure-to-thrive, which is huge. So, yeah, there’s a lot of complications as a result—what I feel like, had he not had NEC, wouldn’t have led to X, Y, and Z probably. He does have development delays. But a lot of it is that he spent so much time in the hospital. Then there was the hearing issue, but he could not get a cochlear implant because he wasn’t healthy enough to have surgery. So it was just sort of this domino effect, and a spiral of getting out of it, and getting him healthy enough to be able to have surgery. And then you’re trying to catch up. You’re trying to catch up with language, fine motor, gross motor, it all, as well. But the kid we were told would never walk or talk, walked into kindergarten last week. So there’s so many things to be thankful for, and so many things that he’s doing so well on, that those are the days you really have to hold onto on the days he’s feeling really, really bad. You have to know that he’s going to get through it. Life will turn around, and it will get better. It’s just going to be interesting to see as he continues to grow, how much of this is just going to continue to get better. Will there be a decline at some point? We don’t know. Nobody really thought he would even make it to this point. STEPHANIE: Now, I’m just curious, sort of, personally, but also as a fellow parent of a NEC baby, have you talked to him at all about being in the NICU? Has any of that come up yet? I mean, I know he’s still sort of young. But I’m just curious. LAURA: Yeah, he knows he was in the hospital. When we drive by the hospital where he was born, he’ll say, that’s where I was born. That’s where my sister was born. He has seen pictures. He’s seen videos. But I don’t think he quite cognitively wraps his head around it. When he had a cochlear implant put in 10 days ago, it was at the hospital where he had NEC. And so we were able to kind of say, you were in the hospital here when we are a baby. A couple of the nurses stopped by to see him—they took care of you when you were a baby. But the cognition is just not quite there too. He sees his pictures. And he’ll say, I was very sick. And, yes, you were very sick—because he knows that his baby pictures look very different from his sister who was born full term. So he knows. He knows he has a G-tube. She does not. And so he’s starting to really realize those differences. STEPHANIE: Right. Yeah, I don’t think we’ve quite reached that yet. Shaymus deals with asthma. So he gets his puffs and he has, you know, different things. But I don’t think they’ve really lined up and taken notes on, you know, your picture has this. And my picture has that. Or you have this and I have that. But, yeah, sort of, it’ll be interesting to talk to them about it when they start to ask. Like, they just figured out that they’re twins this year. LAURA: Oh, that’s so funny. And my husband and I have talked about it. Gee, at what point in their life are they going to realize everything that they went through as a baby. And all these odds that were stacked against them. And all the times that they shouldn’t have lived. And will they be teenagers? Will they be adults? Will it be when they have their own children? My husband and I talk about this a lot. It’s just going to be interesting to see at what point do they kind of go, oh, wow, yeah, that really was what mom and dad went through and what I went through. It’s just fascinating. STEPHANIE: Yeah. So I would also like to let you talk about the work that you’ve done now because of having preemies and Joseph’s diagnosis. So you are the Director of Parent Communication and Engagement at Graham’s Foundation. So I’m happy to let you plug them away, and also to talk about your blog, which is Joseph at Home. LAURA: Yeah, I'll start with Graham’s Foundation first. I started working for them, gosh, about three and a half years ago in a different capacity. And it was one of those things that I was staying home with Joseph. And I was trying to figure out a way that I could give back to the preemie community. But I knew I couldn’t go into the NICU, because here I was with this child who got sick easily. And I knew that that couldn’t happen. So I started working for Graham’s Foundation, which was such a great outlet to be able to connect with other preemie parents, and sort of share stories—share stories with families who lost their child, with families who went through a long-term NICU stay, families who went through a short-term NICU stay. People will say, well I was only in the NICU 10 days. You were in seven and a half months. One day is one day too long for anybody to be in the NICU. And that’s what I always say to people. Nobody should have to go there. And if I can provide any sort of “it’s going to be OK,” I would love to do that. And so now, I serve as the Director of Parent Communication and Engagement. I do a lot of the writing for the blog for Graham’s Foundation, which is something we’re really trying to get off the ground. And through that, I also serve as a NEC mentor. So if parents come across our website and are looking to talk with someone who has experienced NEC, in no way am I a medical professional but I'm able to say: This is what we experienced. This is what we’re experiencing now. These are some questions you might be able to ask the doctor. And it’s been really nice to connect with people. Also, being five years out, to say, I promise you are going to get through this. When you’re dealing with, all along, doctor’s appointments, and you feel like you’ve got 18,000 things going on in one week. I’m here to tell you that I promise you, it gets better. The appointments get less and less and less. And it’s been so nice to connect with parents, and to offer that support from home, while I can still stay home with my kids and be able to work from home. And then also I have my personal blog, josephathome.com, which I started when I found I was pregnant with twins. I didn’t even share the blog address with anybody. My husband and I thought, oh, this will be great. We’ll update it. We’ll send it to friends and family. So as the pregnancy rocked along, I would sort of update it. I could never send out to anybody. And then when they were born Halloween morning, 2009, at 24 weeks gestation, I knew I didn’t have the energy to tell the same story over and over and over about what was happening. The texts were too long to send the information of what was going on. We had two of them, and I just couldn’t do it. And I was, like, oh, I’ve got this blog. This will be a great way to update people, so the long days of sitting in a hospital, my husband worked on our family tree. And I worked on the blog. That is just what we each sort of did to take our mind off of what was going on. And it was a great way, if somebody asked me a question, I would just say, read the blog. It’s on the blog. Just read the blog. I could share pictures—it just—because I wasn’t really in the mood to talk. We would talk to family, immediate family, and share with them what was going on. But it was just—it was so draining to tell the same story over and over and over. And if I just wanted to get something out there quickly, I would put it up. So, when Joseph came home, and I thought, well, I’ll keep it going. We’ll see what happens. It’ll probably die by the wayside. Well, five and a half years later—it’s almost six years later—it’s still going. And I write a lot now just about, of course, about prematurity, but also raising a special needs child and what that looks like, because we’re in this short-bowel world. We’re in the eosinophilic world. We’re in this hearing-loss world. We’re in the cochlear-implant world. We’re in the vision-impaired world. We’re in the mild cerebral palsy world, food-allergy world. And it’s just been nice to be able to connect with other parents and just to write about our real life and what it’s like. What it’s like. How do we deal with insurance? How do we deal with medical supplies? How do we travel? How do we do this, that, and the other? And it’s just a great outlet, too, just for venting, you know. And if I don’t want to talk about it, I can write about it. So we’ll see where it goes. It’s been a really nice outlet. But it’s also a great way to show Joseph, hey, this is where you started. This is where you are now. And it’s almost like a scrapbook, really, of his entire life, because it started the day he was born, and has everything. I just hit my—over 1,100 entries on it. STEPHANIE: That’s great. I commend you on that. I attempted, when I first came home from the hospital, to start recording things. And, I think, honestly, it was just too hard. I sort of thought to myself, I don’t want to remember this piece of it, so I sort of stopped. And I had scraps of paper where I would write down stats every day. You know, they gained this, and literally had, like, a pile two inches thick, by the time they came home, of daily weights and charts and things. Yeah, I mean, I’ve seen many of your posts. And I think they’re great. And I think it’s a great outlet. And, again, sort of that you’re not alone. And, you know, people are better off than you. People are worse off than you. And everybody’s sort of on their own journey. And I know preemie parents tend to minimize amongst other people, but your struggle is really your struggle and your family’s struggle. And no one should have to struggle. LAURA: No. And that’s what I’ve always said to people is, somebody out there always has something worse going on. Like, on Joseph’s worst day, somebody else has something worse going on. And that’s what I always say to people is, yeah, this is just our life in a little nutshell. But we’re so thankful for what we have. And, again, it could always be worse. You can just turn on the news every day and see that. But if it’s just, you know, if it can help one parent to say—and even sometimes I think people don’t like to say, well, this is not fair. You know what, sometimes it’s not fair. And it’s OK to say that and have a little pity party and then move on. And I enjoy being able to say to people sometimes. STEPHANIE: That’s great. So, I guess, is there anything else that you would want to mention if you had somebody in your position, however many years back, thinking to ask the doctors about, or transitioning home—coming home—how you sought out your specialists, if you’re not getting the answers that you think you should, how you proceeded, any sort of big-sisterly advice. LAURA: Yeah, I know, really. I think the big thing is to trust your instincts if you know that there’s something not right. We’ve gone through our fair share of doctors. Because if I feel like my child’s not getting the care that they need—and any parent would feel this way—I’m not going to settle for mediocre. I’m not going to settle for “he’s going to be fine” when you know in your heart that there’s still a problem. We were having some issues last year around the whole eosinophilic diagnosis. And I felt like we had run out of options where we live. And so I reached out to a doctor eight hours away. And he said, if you’re willing to travel, I’m willing to see him. I said, of course, we’re willing to travel. And so we did. He got us in. And we made the trip. And it was so nice to just connect with somebody who was a specialist in that field of Short Bowel Syndrome, to be able to say, yeah, he’s doing OK. I see that there are some problems. But you’re doing the right thing. And I think that’s become sort of my mantra is, don’t stop until you have the answers that you need. And there may not be answers. But I am not going to rest until I know that we have the answers we need. Like, we’re having some eosinophilic issues, so we’re working on getting into a top eosinophilic clinic. I don’t care how far we have to travel, because that’s what Joseph needs and it’s what’s best for him. And that’s what matters. It matters him feeling good. It matters him being healthy. It matters him growing. And he deserves to have the best life absolutely possible. And that’s what I would tell somebody if you’re just coming home. If you feel like something is not right, keep going and keep going and keep going. Yes, it’s exhausting. I think there are many days I’m asleep before my head even hits the pillow. But you have to do what’s best for your kid, because they can’t do it for themselves. You are their advocate. And that’s one thing that the NICU nurses taught us really, really early on—is you have to advocate for your child. Nobody else is going to do it for you. They can’t do it for themselves. You just have to keep going. And, again, it’s hard. You may hit brick walls here and there. Because goodness knows we’ve had our fair share with doctors. And it’s OK with doctors to speak your mind and say, you know, I don’t think you’re right on this. I think there’s more to it. You may upset them a little bit, because there’s no doubt I’ve upset a few. But it’s OK. It’s OK. Yes, they’re doctors. But they don’t have all the answers. You’re the parent. You live with your child day in and day out. You know their idiosyncrasies. You know what’s right and what’s wrong with them. And I think standing up for yourself is so important. And that’s what I would tell somebody coming out. You can’t be shy when it comes to advocating for your child who has special needs. STEPHANIE: I would agree. Yeah, we’re transitioning through preschool. And the boys were kindergarten eligible this year. But they’re actually being given an extra year of pre-K. And we had sort of that, uh, I’m not sure about this. I’m really not sure about it. I’m really not sure about it. And in the end they saw that—their teachers agreed with us. And the educational system agreed that, yeah, they’re a little bit immature. And probably going to kindergarten isn’t the best idea for them. And they really need the extra year. You know, they’re smart. Yes. But good enough isn’t good enough. We don’t want them to sort of eke by. We want to give them the best opportunities that they can have. So I agree with you wholeheartedly. LAURA: And it’s tough as a parent. I’ve had this conversation with a lot of people. My husband’s a teacher. I’m a teacher also. I’m not teaching right now. Hopefully one day I will be again. But it’s hard as a parent. It’s hard as a parent-teacher to have a child who has special needs and who needs that IEP (Individualized Education Program). It’s tough to sit on that end of the table as a parent. I mean, I’ve sat on the other end of the table as a teacher countless times. But, as a parent, it’s a tough pill to swallow, to say—and we know—I mean, Joseph started kindergarten. But we know full well he may need to repeat kindergarten. And while that’s tough to say, it’s a reality. We hope that he does great. But he may need to repeat. And if that’s what’s best for him, then that’s going to be what’s best for him. It’s tough to sit in an IEP meeting and hear how far behind he is. Or these are all the goals. And up to 21 pages now of his IEP. But it’s what he needs. And it’s what’s best for him. But I always go back to the day when one of our favorite NICU nurses—this was a long time ago—said, you know, one day he’s going to pull out a picture of him with all those tubes and wires and on a ventilator and say, see, mom, you remember this. And I have to think back to that, because, yes, it’s hard. And I kind of want to wallow in self-pity about, oh, I wish he was just in a regular ed class. He shouldn’t even be here. And that’s what I have to remind myself is, we had many days where we weren’t even sure we would see pre-K. And I know you’re the same way. We weren’t even sure he would see kindergarten. But here we are. And let’s just make the most of it. He’s loving every second of it. And that’s what matters. And so, being a preemie parent, as you know, it’s a journey that I never expected. But at the same time, I’m grateful for it, because it’s opened my eyes to a whole new area of life. STEPHANIE: Right. Well, I really appreciate you talking to me. And I think you’ve given some great advice—preemie parents or not, and NECs parents or not—on advocating for your child, and in every facet. So I really appreciate your time. And thank you so much. And if there’s anything else that you want to add, feel free. LAURA: If anyone wants to contact me personally, I’m happy to answer questions if there’s something that anybody wants to know more about. STEPHANIE: So great. Thank you. Thank you so much. LAURA: Thank you. STEPHANIE: For more information about Laura or to follow her blog, visit: josephathome.com. A direct link can also be found in this episode’s show notes. You can also email Laura directly at: laura [at] grahamsfoundation [dot] org. In closing, I’d like to share a few thoughts about today’s conversation with Laura. According to Dr. Besner, with whom I spoke about Short Bowel Syndrome in Episode 1, “if we estimate that a newborn baby has approximately 200 centimeters (78.74 inches) of intestine, they have to be left with at least 40 centimeters (15.75 inches) in order to be able to nourish themselves and get off TPN.” As a result of his bout with NEC, Joseph had only one centimeter (0.4 inches) more remaining. So first, I would like to take a moment to celebrate Joseph’s survival, courage, and strength. And that of his family. Both Joseph and his parents have shown remarkable resiliency while dealing with the daily effects of his bout with NEC. Second, I would like to reiterate that I strongly believe that a cure for NEC, once found, will have a far reaching impact not only on Gastroenterology (the digestive system and its disorders) as a whole, but also all of the patients like Joseph, and families like Laura’s. Show your support for our smallest and most fragile babies, those who have the greatest risk for developing NEC. Show your support for continued research in NEC. And join our effort to raise awareness about, and funds for research in NEC by making a donation to Morgan’s Fund at morgansfund.org/donate. If you’ve had a personal experience with NEC and would like to share your story, or have a question or topic that you’d like to hear addressed on our show, e-mail us at feedback@morgansfund.org. We’d love to hear from you! Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

Dr. Martin Lee. Photo courtesy of Prolacta Bioscience. Episode 4 features Dr. Martin Lee, Vice President of Clinical Research and Development at Prolacta Bioscience. During this episode, Dr. Lee provides a comprehensive overview of a 100% or exclusive human milk diet in the prevention of NEC in extremely premature babies, those weighing less than 1250 grams (2 pounds 12 ounces) and who have the greatest risk for developing the disease. He discusses: * His transition from the blood industry to Prolacta, which developed of the world’s first human milk-based human milk fortifier * What constitutes a 100% or exclusive human milk diet * The clinical evidence showing a 70% reduction in NEC, an 8-fold reduction in surgical NEC, and a 4-fold reduction in mortality through the use of exclusive human milk diet * The importance of safety in the breast milk industry, including Prolacta’s rigorous product testing and donor safety profiles which parallel blood industry standards. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. [powerpress] STEPHANIE VAUGHAN, HOST: Welcome to Episode 4 of Speaking of NEC—a free, audio podcast series about Necrotizing Enterocolitis. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org. Hello, my name is Stephanie Vaughan. Welcome to the show. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. Today, my guest will be Dr. Martin Lee, Vice President of Clinical Research and Development at Prolacta Bioscience, which “creates specialty formulations made from human milk for the nutritional needs of premature infants in neonatal intensive care units.” Last October (2014), while attending the annual Preemie Parent Summit in Phoenix, Arizona, I had the pleasure of meeting Prolacta’s Chief Executive Officer Scott Elster. During our conversation, I was invited on a tour of the company. A few weeks later, along with a group of representatives from various preemie organizations throughout the country, I flew out California to tour Prolacta’s human milk processing facility, and to learn more about the people and research behind the company. I was highly impressed by all aspects of Prolacta from the manufacturing plant itself to the rigorous testing their products undergo throughout their processing. Even more impressive to me is the fact that everyone that we met at Prolacta has a personal connection to prematurity. The CEO himself is the parent of twins born prematurely. And, I was shocked to learn that one of the key reasons the company was formed, and their products developed, was to reduce the incidence Necrotizing Enterocolitis. The company’s reason for existing is the prevention of NEC. And the research presented to us by Dr. Lee was stunning. So when we began producing this series, it was only fitting to invite Dr. Lee to share the benefits of an exclusive human milk diet to premature infants and the clinical research supporting its use. With that in mind, let me introduce my guest today. This is Dr. Martin Lee from Prolacta Bioscience. And I’m so glad you could be with me here today. How are you? MARTIN LEE, GUEST: Good. How are you doing Stephanie? STEPHANIE: Good, good. So in previous podcasts, we’ve talked to doctors that are attending neonatologists and researchers. So I would like to give you the opportunity to give a little bit of your background and how you got involved with research in NEC. DR. LEE: OK. Absolutely. Well, I spent probably most of my career doing clinical research with various types of pharmaceutical and biotech products. I started with a company you’ve probably heard of called Baxter approximately 35 years ago, and I spent a good number of years working with them. And how that’s relevant to our discussion today is I was working with their group that manufactures blood products, and obviously blood is a significant human fluid, has many of the same issues with regards to safety that we have with breast milk. And so I learned a lot about some of the testing that needs to be done, some of the safety factors that we need to consider. And then I would say about 15 years ago, I met someone who was talking about forming a company who basically wanted to bring breast milk and breast milk products to premature infants so that they would have the benefit of receiving 100% human milk diet, particularly the smallest of the small premature infants. So together we started the company Prolacta. And the whole idea of course in starting the company was to put it‚…I think the most important thing was to put it on a firm clinical scientific basis. And that meant doing really important well-designed clinical trials to evaluate the most important morbidities like NEC, in particular, and even mortality in premature infants, infants certainly that had a high risk of both of those consequences of prematurity. STEPHANIE: OK. Maybe not all of the people that will be listening fully understand…what is an exclusively human milk-based diet? Can you get into that a little bit? DR. LEE: Absolutely. So obviously we know‚…we meaning pretty much the world understands that the best thing a newborn baby can be fed is mother’s milk. And for term babies, that is obviously going to be sufficient. They’re born at the right time and usually at a sufficient weight and mother’s milk has all the good things in it that help the baby to grow, help their immune system to develop, help their organs to develop, importantly it helps their brain to grow at the right rate. But a premature baby by definition is born too soon. And we specialize‚…the work that we’ve done at Prolacta,…specializes in the infants that are born as much as 27 weeks or 12 weeks premature so 27 weeks since the time of gestation. When those babies are born, they have a lot of problems obviously because they’ve come out of the womb way too early. And one of the things that of course they are is way too small. The average baby that we’ve studied in our research trials is less than a thousand grams. That’s around two pounds. Now most people know that the average baby is 6-7-8 pounds. And so they’re born so small that what happens is that mother’s milk which of course comes in when the baby’s born‚…nature didn’t intend mother’s milk to be able to feed these type of babies. This is an unfortunate consequence of something that happened with the mother, something that‚…injury, genetics, whatever it is that would cause a baby to be born premature, the milk comes in, but it cannot feed that baby well enough. And what I mean by that is the baby needs to grow. He needs to grow a lot. The baby needs to have their immune system protected by the mom’s milk, and so on and so forth. So obviously we always talk about mother’s milk being the thing for a newborn baby. It’s not enough for these premature infants. So what they need is what we call a fortifier, something with a little extra kick to the baby. And there are fortifiers that have been on the market for a long time. They’re made by the formula companies. And naturally these fortifiers are made from cow’s milk. And cow’s milk is not the best thing for a premature infant. It may not be the best thing for babies in general, but besides the point, it’s certainly not the best thing for a premature infant. So when we’re talking about 100% or exclusive human milk diet, we’re talking about mom’s milk; we’re talking about a fortifier which is necessary for the baby to grow and to be protected from infection and so on and so forth. That comes from human milk. And what Prolacta did was develop the world’s first human-milk human milk fortifier. And in fact, it sounds like a mouthful because when we talk about human milk fortifier, general people realize or may not realize that that’s a cow’s milk-based fortifier. We make the one from human milk. So that’s what we mean by 100% diet. And then one other thing just to add to that, Stephanie, is sometimes mom’s milk doesn’t come in enough or the baby wants it or needs to eat more, get more milk, so then there’s donor milk involved too. And that’s another aspect of the 100% diet. And of course donor milk is coming from other moms, which again provides the additional nutrition that the baby needs. And there you have the entire spectrum of what we mean by 100% human milk diet. STEPHANIE: OK. Thank you. Yeah, I know that there’s probably a bit of confusion amongst parents new to the NICU that human milk fortifier is a fortifier put into human milk, and not necessarily made with human milk. So I know that that does tend to cause a little confusion. DR. LEE: Right. STEPHANIE: So thank you for clarifying that. DR. LEE: Sure. STEPHANIE: So I guess I’ll ask you to go into a little bit of the research because I find it fascinating. As you know, we were out to your facility in November and I thought that this is a fabulous company. I was not aware of it when our babies were in the NICU and I will just make a tiny note that I know you’ve got significant statistics showing the benefit of human milk and exclusive human milk. Unfortunately for Morgan, he fell in to that other small percentage that I did pump. But he developed NEC so rapidly at four days old being born at 28 weeks. At four days old he developed NEC and I don’t think he had two feedings. So there are babies that get it even when all attempts are made to have an exclusive human milk diet. DR. LEE: Sure. STEPHANIE: And I also know that my other son, Shaymus, his milk was fortified, and to be honest, I’m sure it probably wasn’t with an exclusive human milk fortifier. So just some things to sort of give everyone background. And again, that was, you know, four years ago, 2010-2011. DR. LEE: Sure. I hope…I assume they’re doing OK today, right? STEPHANIE: Yes, yes. Everybody’s doing very well today… DR. LEE: Excellent. Excellent. STEPHANIE: which I think is why I’m so personally‚…my personal opinion is that your products are wonderful and, you know, things being what they were then versus now, I would definitely advocate for 100% human milk diet and advocate for this if I was a parent in the NICU now. So I think it’s great to get this information out to people. DR. LEE: Sure. Absolutely. So your question concerned the type of studies we did. Well, as I said to begin our conversation, we recognized that the only way that people‚…the medical community, both neonatologists, nurses, lactation people‚…would appreciate and realize the importance of what 100% human milk diet does and helps as far as the baby is concerned is to do proper research. As I said earlier, my experience is in the pharmaceutical and biotech industries where doing formal randomized controlled all the kinds of bells and whistles that need to be done when you need to license a drug or a biologic for marketing in this country and other places in the world as well. That’s standard stuff. So when we set out to do these studies, we said what we’re doing here is just as important, just as the need for rigor has to be here as it would be in any other kind of situation where you’re testing a new medical intervention. And that’s what this is. So we decided right off the bat we would get together the best of the best as far as the neonatologists in this country are concerned, and we brought them together and we set up a protocol. And basically the protocol was based on a very simple premise. It is 100% human milk diet better than feeding a baby mom’s milk fortifying then with standard human milk fortifier and then if all else fails or at least maybe not be sufficient than using formula. That’s standard practice for premature infants in this country. It was in 2007 when we started this trial and to a large extent it still is today. So it’s 100% human milk diet standard of care which includes cow’s milk based fortifier and formula. Babies in this study were randomized which is‚…you know, it’s a fairly simple term, but just to make sure everybody understands what I mean by that, the decision when a parent agreed to have their baby be participating in the study which group they get into, the Prolacta or the 100% diet versus standard of care was essentially a coin flip, not literally of course, but that’s the basis. Now why do you do that? Because that’s the best way to design studies. It provides an unbiased approach to making the decision of treatment of nutritional treatment, taking it out of the hands of anybody and putting it in the hands of strictly chance. So you randomize babies. There was a sufficient number of babies in the first study we did. There was over 200 babies that were randomized and I think it was 12 centers around the country. And what we were looking for in this study was whether or not they develop NEC and that was the most significant endpoint of the study. There were other things that we looked at. We looked at how much parenteral nutrition they received. We looked at other things. We looked at sepsis. We looked at‚…which is essentially bacterial infection that circulates in the bloodstream. We looked at hospital days. We looked at days on a respirator/ventilator and so on and so forth. But the main endpoint in this study was Necrotizing Enterocolitis. Now, the babies, by the way, that we used in this study or the babies that constituted the population of the study were babies under 1250 grams (2 pounds 12 ounces) down to 500 grams (1 pound 1 ounce). Very simple reason for that. I think many of the people listening will know that there’s a classification of premature infancy called very low birth weight. And that’s babies under 1500 grams (3 pounds 4.91 ounces). But we said, you know, we want to get the babies that have the highest risk of NEC. So we didn’t use, if you will, the heaviest babies in that weight category because they have, it turns out, the lowest risk of NEC out of all very low birth weight babies. So we took away that 1250-gram group. We also didn’t go below 500 grams because unfortunately, babies born less than 500 grams which is really about a pound or less have unfortunately not a high chance of either succeeding in life really and survival or they have a lot of other problems that make it very difficult to evaluate then. So it was 500 to 1250. That’s basically, I think, the most important aspect. And like I said, they were randomized. We followed them for a period of 90 days, maximum 90 days. Babies could have gotten off the study earlier if they got on to mostly oral nutrition which of course hopefully babies all do because they start off with what’s called parenteral nutrition which means they get their feed essentially through intravenous feeding. They then transition off of that onto enteral feeding which is typically a tube that goes either through their nose or directly through their mouth into their stomach. And that’s called enteral feeding. And then they go to oral feeding. So babies who are on for 90 days or if they got to oral feeding sooner, then they were off the study. Very simply, just to summarize what constitutes a fairly complex study to manage, we found a magnificent reduction in Necrotizing Enterocolitis. The babies in the standard of care group had a NEC rate of about 16%. Or put simply, that one in every six babies develop NEC that got some sort of cow’s milk protein or cow’s milk diet. The babies who got 100% diet was less than 6%. That 16 to 6 is about 70% reduction, and that is phenomenal. We’ve had some of the really very famous neonatologists told us that they don’t see‚…you don’t see that kind of reduction with really any intervention that they’re used to seeing. You just don’t see that. You see incremental things. But now all of a sudden we cut NEC by 70% by doing this. And it even gets more impressive when you consider that the majority of babies or at least half the babies who develop NEC have to go on to have surgery. STEPHANIE: Right. DR. LEE: And that is a really serious consequence not only just from the fact that a premature infant has to go on to major surgery and they take out part of their digestive tract. But even worse, they have a reasonably high mortality rate. So in this study, the rate of NEC surgery of all those babies that were in the two groups, it was at 11% in the standard of care arm and only just over 1% in the Prolacta arm. We reduced the rate of NEC surgery by eight fold, I mean just an incredible difference. Virtually wiped out NEC surgery in this study. STEPHANIE: That’s amazing. DR. LEE: Yeah. I mean, we expected to see something really good. We didn’t expect‚…I guess you could say well we should have expected‚…but it was beyond our expectations, wildest dreams to show this kind of effect. Now a lot of people have looked at this data and said well that’s interesting, and maybe that’s real. But can you‚…you know, can you do it again? And the answer is yeah. We did it again because that first study that I just described, these were only babies who were getting‚… which are most babies‚… who were getting some breast milk from their mom. But there are a small cohort of‚… I don’t know quite what the percentage is in this country, but there’s a percentage of babies who don’t get any breast milk. There’s various reasons. Mom is sick. Mom’s not available. So on and so forth. So we also did a second study in which we only treated babies or fed babies who had to get their nutrition either one of two ways. Since breast milk wasn’t available, they got formula. Soon as they were able to get enteral feeding, in other words the tube feeding, they got formula. That’s one group. The 100% arm, same thing, except here, instead of getting mom’s milk, they got donor milk, and then they got the fortified. So it was a real stark comparison. Only human milk, only formula. And it was a very small study. It was only‚…that first study, I don’t know if I mentioned or made clear, that was a 200-baby study. Pretty big study. STEPHANIE: Yes. Um-hmm. DR LEE: This study was only 53 babies partly because it was very, very hard to find these babies. I mean, we would sign up a mom, they would agree to put their baby on, and then they realized gee, I really want to feed my baby. I really want to give them breast milk. And of course, that’s fine. That’s great. STEPHANIE: Right, right. DR LEE: But they can’t participate in the study. STEPHANIE: Right. DR LEE: So we had a hard time finding. But we eventually did it. Took us three years to find 53 babies, but we did, and you know what? We found the same significant difference, particularly in the surgical NEC. There were‚…in the control arm, there were 24 babies, and four of them had to go on to surgery for NEC. That’s one in six. So about 16%. In the Prolacta arm, in the 100% milk arm, nothing, no surgeries, nothing. One case in NEC overall, but no surgery. So that turned out to be wow. That’s the kicker. Two separate studies, two different classes of babies, breast milk, no breast milk, doesn’t matter. When you give a baby that’s born premature like this, this weight category, less than 1250 grams, and you feed them with only human milk, they’re going to do better. And it even turns out when you start putting all the data together an extra‚…I hate to call it a bonus‚…but an extra important key outcome was that mortality was reduced. Mortality fortunately in this baby population is pretty low. It’s about 8% overall because of the prematurity, of course. We reduced that to 2%. So a four-fold reduction in mortality. So now when you put it all together, what do you have? You have prevention of the major morbidity‚…that is NEC‚…of prematurity, and you prevent mortality. And how can you really ask for anything more from a nutritional approach to these really fragile infants. STEPHANIE: Right. Right. No, I totally agree. And as I said before, my personal opinion, you know, as the mother of a surgical NEC survivor, I would advocate for this if we had to do it again. It’s definitely phenomenal. DR. LEE: Yeah, it’s almost this kind of effect you would expect to see if this was a pharmaceutical breakthrough or some new wonder drug or some sort of biotechnologically-produced intervention. But all it is is feeding the babies properly. I mean it’s such a fundamentally sound, logical‚…this is what nature wanted these babies to get. STEPHANIE: Right, right. DR. LEE: Babies should get human milk, nothing else. STEPHANIE: Now you had mentioned previously the difference between donor milk and then your human milk nutritional products. Can you‚…when I hear conversations, I sort of always think it’s like comparing apples and oranges. You know, it’s almost two different things. So can you clarify what the difference is with donor milk and your products? DR. LEE: Well, again, I’m sorry to be maybe not entirely clear. We make a donor milk product. Essentially, all our products are made from donor milk, both the fortifier, of course, and we make a simple donor milk product that is formulated to have 20 calories per ounce which is what doctors and nurses and dieticians believe they’re giving the baby when they feed the baby either mom’s milk or milk from another person. So donor milk is essentially the equivalent of mom’s milk other than the fact, of course, it comes from another mom. But however‚…and in fact, the American Academy of Pediatrics has said the best thing for a baby is mom’s milk. But if mom’s milk is not available, then donor milk is good. STEPHANIE: Right. DR. LEE: But the problem, of course, and one of the I guess you could say‚…I’m trying to think of the right word. Bad things that people associate with donor milk is well it comes from somebody else, and how do I know that person is the right person to provide milk for my baby? And that’s one of the key things that we had at the center of what we did at Prolacta from the beginning, which was to have a safety profile that was beyond reproach. I mean, we do things as far as testing the moms, testing the milk, that nobody else who ever handles breast milk does pure and simple. I’ll give you some examples. One of the things that I thought of very early on is because, again, remember I told you I came from the blood industry and they test blood and they test donors obviously every which way you can think of. But there’s one additional problem that donors who provide milk have in a sense that blood donors don’t. When you take blood from a donor, you’re seeing the person and it’s blood coming out of their vein and it’s coming right into a bag and you know whose it is. But a milk donor, she donates at home, pumps at home, puts it into containers, and then sends it wherever the donor, the milk bank, might be. In our case, it’s here at Prolacta. They’ll send it to us, and here’s the problem. How do we know it’s that person’s milk? STEPHANIE: Right. DR. LEE: How do we know it’s the person who we screened and did all the blood testing on to start with, that it’s her milk. So we do something very, very unique. We actually have the mom provide a DNA sample, they do a little cheek swab, they put a little stick essentially in there, and scrape off a little tissue from inside their cheek, send it to us so we have a profile. Now she sends us her milk, and when she sends us her milk, we can actually match it up. And now we know it’s that safe mom’s milk, all right? Now you might ask what’s the point? I mean what self-respecting individual is going to send somebody else’s milk to you? And the answer is nobody, for the most part I can say almost universally, will do that intentionally. But there are mistakes. I mean one of the things we’ve seen is moms that are lactating, sometimes there’s a couple of women in a neighborhood, and they’re all doing the same thing. And somebody’s freezer will become full with milk, and they’ll say to their neighbor, “Can I put my milk in your freezer?” And they said, “Sure, no problem.” And she’s got her own milk in there. And then they go to ship milk and lo and behold, there’s somebody else’s in there. We love that‚…we love the moms, but we have to be sure that every mom that donates is a mom that’s free of all of the nasty things that could be in blood because those things could be in milk as well like AIDS and hepatitis and syphilis and all those kinds of things that we should be concerned about. Even as an adult you certainly want to get blood from someone like that. You certainly don’t want to give that to this fragile premature infant. STEPHANIE: Right, right. DR. LEE: So going back to your original question about what we do versus donor milk, that’s all one in the same, I think you could safely say. Everything is based on the concept of donors and the milk that they provide and the safety of that milk supply being tested from any way you can think of so that every product that’s made from human milk is as safe as possible based on all of the different protocols that are used. And that includes other things besides DNA testing. It includes drug testing; it includes testing for whether the mom smokes because they may tell you they don’t smoke, but we’ve seen that instance where there’s byproducts of nicotine in the milk, and that’s not good for a baby. So we do that kind of testing. It’s just a laundry list of things to make that as safe as possible. STEPHANIE: Right. And I guess‚…I’m sorry‚…I guess to clarify my original question, I was speaking specifically about your fortifiers versus human milk. If you could explain a little bit the difference of that‚…I mean this was a very good‚…I can’t think of the word‚…a very good deviation, but yeah. When I was saying apples and oranges, I meant donor milk versus fortifier. DR. LEE: OK. I’m sorry. STEPHANIE: No, that’s OK. DR. LEE: The fortifier essentially‚…if you want to keep it very simple, the fortifier is just very concentrated milk. STEPHANIE: OK. DR. LEE: So essentially, what you do to make the fortifier is you take milk, you filter it to get rid of a lot of the fluid so that you concentrate the protein, you concentrate some of the other important nutrients in there. And that way the baby can get extra, like we say, protein, extra other nutrients in a very, very small volume. So for example, in our typical fortifier which we call Prolact +4, if you add that to mother’s milk in a ratio 80% mother’s milk to 20% fortifier, assuming mother’s milk is about 20 calories per ounce, you’re going to add 4 additional calories for that baby in that small volume which is a lot. So then we can actually do even more than that. We can do a +6, six calories, we can do +8 and even +10. That kind of product is for the babies that are the most fluid restricted. They can get 30 calories per ounce in the same volume that milk that originally was 20 calories per ounce was. So that’s really important for those babies, for example, that have heart defects who can’t take in a lot of fluid or babies for whatever reason are fluid restricted. STEPHANIE: OK. Thank you. DR. LEE: Sure. STEPHANIE: Yeah, that was‚… I think it’s important for parents and family members that might be in the NICU to be able to have a conversation with their doctor and fully understand what’s being given to their baby and be able to ask the right questions. So would there be anything else that you would want to add if you were talking to a parent who’s got a baby in the NICU right now for them to be able to advocate best practices for their baby? DR. LEE: I think that the simple issue for a parent under these circumstances is to ask the doctor based on all of the evidence that’s out there, clinical evidence,…and that’s how doctors make decisions. We talk about evidence-based medicine. This is based on the best evidence that the doctor is aware of, what’s the best way to feed my baby? And having said that, you know, the evidence that we’ve discussed here today is for those smallest of the small. For a larger baby, this is not necessarily‚…it’s not that it’s wrong. It may not be necessary, but when you’re dealing with the smallest babies and the ones that are struggling to survive and grow and thrive and get to where you want all babies to get to, to childhood and so on, then you have to ask the doctor the question what is the best way that our baby can get out of that NICU, that Neonatal Intensive Care Unit, and get home and be with his or her parents. That’s really, I think, the fundamental question. And the doctors should be able to answer that question based on the evidence that exists for the diet that the baby should be fed. STEPHANIE: Right. Thank you. Yeah, I think this is a really great conversation for any parent in the NICU, especially those, like you said, the smallest that are at the highest risk for developing NEC and as you said, other issues as well. And it’s‚…it can only be a benefit in my opinion. DR. LEE: Absolutely. And just to add to that, they should also ask the question‚…because there are other sources of nutrition, and there are other places from which milk can be attained we know about, for instance, women sharing milk on the Internet, milk sharing sites. You’ve got to be extremely careful. You’ve got to ask the question not only what’s best for my baby from the point of view of effectiveness, but also what’s the safest for my baby. And you want to be sure that the source, where that milk is coming from, where those products are coming from, comes from a place where you can say everything possible based on modern technology has been done to protect that milk, protect the safety of that milk. And I think that’s really critical. I think there was a story the other day‚…I forget which show, where it came up in one newspaper or another‚…about‚…oh, I know what it was. It was an article that was published that basically looked at milk samples. They actually collected milk on one of these sharing sites, and they found a large percentage of them had nicotine in the milk, had other things, other bad things that you don’t want a baby to have in that milk. So you’ve really got to ask that question what’s the best? What’s the safest for my baby as well? STEPHANIE: Right. Right. And Prolacta has provided us some material, some reference materials for sharing. So I will say that we’re going to be posting those on our website and will have them in the show notes as well. And I really appreciate you taking the time to talk to me today. If there’s anything else at all that you would like to add, please feel free. DR. LEE: Well, I just want to thank you for the opportunity to let obviously the parents out there know that we’re here for one very, very simple reason. I mean I know it may sound kind of corny, but we said from the day we opened the doors at Prolacta that we’re here to save babies, and I think we’ve done our job in that regard. And we’ve proven that that’s the case. So I’m really‚…I’ve worked, as you heard me say, for 35 years doing clinical and medical research, and I’m very, very proud to say that this is, I think, my best story to tell out of all that long career. STEPHANIE: Right. And as I said, I was out in the facility, took the tour in November, and we were very impressed with your company. And like I said, if I had to do it all over again, I would certainly be asking these questions and in my opinion, I think this is a phenomenal company. And your rigor in testing and your facility are top notch. So thank you. LEE: Well, thank you. Thank you. I really appreciate that, and it means an awful lot to me and to obviously everybody that works at Prolacta. STEPHANIE: Right. So thank you for joining us. And hopefully we’ll talk again soon. LEE: Alright. Thanks so much, Steph. STEPHANIE: In closing, I’d like to share a few thoughts about today’s conversation with Dr. Lee. Recently, I’ve seen a lot written about the use of donor milk, human milk products, and the emerging breast milk industry. Often times, the opinions expressed about Prolacta are solely related to cost: the expensive of Prolacta’s products versus those coming from nonprofit donor milk banks. In my opinion, the cost of using Prolacta’s human milk-based human milk fortifier far outweighs the potential risks of not using it, and any discussion about cost needs to be framed within the context of total cost of care. As Dr. Lee mentioned, Prolacta’s human milk-based nutritional products are intended for extremely premature infants who weigh less than 1250 grams (2 pounds 12 ounces) at birth. My son Morgan weighed 2 pounds 5.5 ounces at birth; my son Shaymus weighed 2 pounds 7 ounces. Prolacta openly shares that the typical cost of using their human milk-based human milk fortifier for these babies is $10,000. That, however, is only a fraction of Morgan’s and Shaymus’ total cost of care. Each of whose exceeded $1 million. In actual numbers, the cost of an exclusive human milk diet using Prolacta’s human milk-based human milk fortifier would have been less than one percent of Morgan’s total cost of care, and less than one percent of Shaymus’ total cost of care. And while Morgan’s case shows that no current preventative strategy for NEC is 100% effective, research shows that access to, and the use of, an exclusive human milk diet significantly reduces the risk of NEC in the majority of extremely premature infants. Show your support for our smallest and most fragile babies, those who have the greatest risk for developing NEC. Show your support for continued research in NEC. And join our effort to raise awareness about, and funds for research in NEC by making a donation to Morgan’s Fund at morgansfund.org. If you’ve had a personal experience with NEC and would like to share your story, or have a question or topic that you’d like to hear addressed on our show, e-mail us at feedback@morgansfund.org. We’d love to hear from you! Additional resources: Prolacta Bioscience, Inc. What Is Necrotizing Enterocolitis? N.p.: Prolacta Bioscience, 2015. Print. Prolacta Bioscience, Inc. 100% Human Milk: The Best Nutrition. N.p.: Prolacta Bioscience, 2014. Print. Prolacta Bioscience, Inc. Nutrition for Premature Babies. N.p.: Prolacta Bioscience, 2014. Print. Prolacta Bioscience. Premature Babies: What to Expect. N.p.: Prolacta Bioscience, 2014. Print. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

  Episode 2 features Dr. Adam Matson, attending neonatologist at Connecticut Children’s Medical Center-Newborn Intensive Care Unit (Hartford, CT) and Assistant Professor of Pediatrics and Immunology at the University of Connecticut School of Medicine (Farmington, CT). During this episode, Dr. Matson provides a comprehensive overview of NEC as it relates primarily to very low birth weight babies, those weighing less than 1500 grams (3 pounds 4.91 ounces) and who have the greatest risk for developing the disease. He discusses: * The early warning signs of NEC, what steps are taken when NEC is suspected, and how X-rays are used to diagnose NEC * How a premature baby’s immune response to the microbiome (bacterial communities) of the intestine appears to play a role in the development of NEC * Known risk factors of NEC, and how they may affect the intestinal microbiome * His current research focused on innate immune signaling in the developing intestine as it pertains to the development of NEC * Current prevention strategies for NEC * Additional research trends in NEC, and the importance of efforts to prevent prematurity Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. [powerpress] STEPHANIE VAUGHAN, HOST: Welcome to Episode 2 of Speaking of NEC—a free, audio podcast series about Necrotizing Enterocolitis. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org. Hello, my name is Stephanie Vaughan. Welcome to the show. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. Today, my guest will be Dr. Adam Matson, attending neonatologist at Connecticut Children’s Medical Center-Newborn Intensive Care Unit in Hartford, CT, and the Assistant Professor of Pediatrics and Immunology at the University of Connecticut School of Medicine in Farmington, CT. Dr. Matson will share with me today a comprehensive overview of NEC as it relates primarily to very low birth weight babies, those weighing less than 1500 grams or 3 pounds 4.91 ounces, who have the greatest risk for developing the disease. During our conversation, he will discuss in varying degrees: Early warning signs, Steps that are taken when NEC is suspected, Diagnosis, Risk factors, Prevention, Current areas of research, and The importance of efforts to prevent prematurity He will also discuss how a premature baby’s immune response to the microbiome or bacterial communities of the intestine appears to play a role in the development of NEC, and his current research focused on innate immune signaling in the developing intestine as it pertains to the development of NEC. With that in mind, let me introduce my guest today. Welcome, Dr. Matson, thank you for joining us today. I’m very excited to talk to you. DR. ADAM MATSON, GUEST: Thanks for having me here. STEPHANIE: As you know, we’re talking about Necrotizing Enterocolitis, but I’d love for you to tell me about your experience in the NICU and then in the NICU in relation to your experience with NEC. DR. MATSON: Okay, well, I am an attending neonatologist at Connecticut Children’s Medical Center, which is located in Hartford, Connecticut, and there I’m involved with taking care of premature babies and infants with other types of medical problems. And unfortunately, Necrotizing Enterocolitis is one of the disease processes that does affect premature babies in our unit as like many other NICUs around the world. In our NICU, we average probably about 14 cases of Necrotizing Enterocolitis, or I’ll refer to it as NEC, per year, so it’s a major medical problem for these infants. As I mentioned before, it’s unfortunate that I do have experience in managing these infants. STEPHANIE: So what can you tell me as a parent about I guess signs and symptoms and what you guys as the doctors and clinicians and nurses are looking for that’s, I guess raises a red flag for you that this baby might have NEC? DR. MATSON: Sure, so NEC is most common in the very small premature babies, particularly those that are with birth weights less than 1500 grams (3 pounds 4.91 ounces). So these are infants that are typically being fed by a feeding tube that’s introduced into the nose and goes down to the stomach, or into the mouth and goes down to the stomach. Usually these babies are too small or weak to eat on their own. And it’s a gradual process. We start with small volumes of feeds and increase them gradually. And the types of symptoms that babies can start to develop when this process begins can sometimes be nonspecific. They can have decreased activity, they may have increased apnea spells (moments when the baby stops breathing) is something that we’ll see. Their abdomens can become more distended. One of the things that we’ll frequently check for are something that is referred to as aspirates. This is when a nurse is going to give a feed with feeds being given every three hours. They will check the stomach to see how much of the prior feed has actually gone out of the stomach and into the intestines. So often times if the intestine is starting to not feel too happy, that feed can sort of back up and that’s called an aspirate. If the volume becomes excessive, one of the measurements that we’ll use in our unit is more than 50% of the prior feed, that’s a red flag for us. STEPHANIE: Okay, actually that was the first symptom that Morgan had was his aspirate they said was tinge green which was an immediate red flag and x-rays were taken bedside and that’s—rapidly they discovered that he had NEC and that’s when he had his surgery. So that was definitely a red flag with him. DR. MATSON: Sure, those signs occur particularly when the aspirate turns green, as you had mentioned for your son that indicates that bile that’s being emptied into the intestine is not emptying down into the more distal portions of the intestines. So for his bile to start backing up, that’s absolutely a warning sign. STEPHANIE: Okay, thank you. So is there anything else that would be a good warning for parents or questions that they should ask if something’s maybe not looking right? DR. MATSON: Well, as I had mentioned, many of the signs can be nonspecific and they can actually often occur very fast as well. You know, we do monitor as I had mentioned for those things, bloody stools as well. And if those sort of warning signs come up, typically we’ll end up holding some feeds for a while to not overwhelm the stomach or the intestine with additional food, and as you had mentioned, we’ll end up doing x-rays and that’s the primary way that Necrotizing Enterocolitis is diagnosed. Really what we’re looking for with those x-rays is a finding referred to as pneumatosis intestinalis. And what that is is part of the pathophysiology of NEC is as bacteria are starting to invade through the intestinal wall, they can start to produce gas and make gas bubbles, and when we do x-rays looking for NEC, if we visualize those gas bubbles in the walls of the intestine, that’s diagnostic that the process is indeed happening. STEPHANIE: Okay, so can you tell me a little bit on the flip side of your experience with NEC on the research side? DR. MATSON: Sure, you know, perhaps I should talk a little bit about in that regard on what we think actually causes NEC. And I think that the answer to that right now is that we don’t know exactly. But it appears to be a rather complex interaction between bacteria that are inside the intestine, and exaggerated or overactive immune response that’s happening inside the intestine. The whole hypoxia or decrease in oxygen within the intestine also probably plays a role in some cases. But studies have indicated at least in many cases of NEC it’s not—it doesn’t appear to be attributable to a single bacterial species like E. coli or Salmonella. But it appears to be more related to bacterial communities or what we would say is the microbiome of the intestine which can be influenced by certain things that we know to be risk factors for Necrotizing Enterocolitis as well such as formula feeding, where breast milk—human milk is protective, excessive use of antibiotics, antacids, those sorts of things are thought to disrupt the microbiome and result in overgrowth of different species, particularly gram negative bacteria. And when there’s an overgrowth of those types of bacteria in the intestine, those appear to activate certain receptors that are inside the intestine— this is getting into a little bit of the research that I’m involved with, because these receptors primarily in premature infancy appear to be very sensitive to a large number of these gram negative bacteria, and as they start to become activated, they start to break down the intestinal epithelial lining and this results in trans-location of bacteria through the intestinal mucosa—the protective barrier, and then activation of immune cells in the deeper layers. Another feature of the premature infant is that they’re really not able to control that immune response in their intestine very well, so they end up with a very profound inflammatory response in their intestine. That’s really what Necrotizing Enterocolitis is. It’s the most common gastrointestinal emergency in premature babies. It occurs primarily in premature infants. It’s characterized by diffuse inflammation and necrosis, or tissue death inside the intestine. And it’s also associated with very significant morbidity and mortality. About 15 to 30 percent of infants who develop NEC may ultimately die. So it’s a major problem for this population. STEPHANIE: And can you tell me, I guess a little bit more about what the hospital’s doing in their research? And more specifically, what other areas you’re researching? DR. MATSON: Sure, so our hospital, we have a number of different projects that we’re involved in. We have a very active lactation program where we’re looking at different aspects of human milk. I had mentioned before that one of the main risk factors for Necrotizing Enterocolitis is diet and formula feeding, and we do know that providing human milk reduces the risk of NEC by about 50 to 90 percent providing a diet of exclusive human milk. So we are currently looking at factors inside of breast milk, macronutrients and how they affect the bacterial populations inside of the intestine and how that may ultimately contribute to infants developing this process. More specifically in terms of laboratory work, we’re now working with some collaborators at UConn Storrs as well and we’re doing a preemie poop project where we’re collecting a lot of fecal samples from babies inside our NICU. And we’re doing a real detailed analysis, molecular analysis where we sequence out basically all the different microbial species or bacterial species inside the intestine. And one of our hopes with this study is that we’re able to identify how diet and exposure to medications affect the bacterial populations inside the intestine, which we know has a very strong role in Necrotizing Enterocolitis. I also have a laboratory at UConn Health Center in the department of pediatrics and we’re looking a little bit deeper at some of the receptors inside the intestine. There’s a group of receptors that I refer to as toll-like receptors, and these recognize molecules that we refer to as pathogen associated molecular patterns or PAMPs. So these are the receptors that are on the surface layer of the cells that line the intestine and respond to these different bacteria. And I think this is the type of research that tying in aspects of clinical care with breast milk to knowing what’s actually growing inside the intestines in terms of bacterial populations, and then looking at more detailed molecular aspects of immune signaling inside the intestine and what’s ultimately controlling the inflammatory process. STEPHANIE: That’s very interesting. Is there anything else that you would like to add about research specifically? I know one of our major goals is to help the doctors and researchers advance research through funding. So can you talk to me a little bit about funding for research within the NEC community? DR. MATSON: Sure, well I think that one of the areas that would likely help the most is more funding to look at causes of premature birth. This continues to be a major problem in the United States and elsewhere. Up to ten to eleven percent of infants are born premature. And a significant number of those babies are the very premature infants that are at the highest risk for developing NEC. So I think that I need to mention that as really one of the primary areas because there’s a lot of different challenges that these babies face, and the more that we can prevent preterm birth, I think that would be advantageous for them. The other aspect I think would be important to look at is in terms of diagnosis or earlier diagnosis. Being able to identify which babies are starting to develop some changes in their intestine earlier. I have a colleague that I work with who often says that it’s when we’re diagnosing by x-ray, it’s almost like arriving at the crime scene after the crime has already been committed. STEPHANIE: Mm-hmm. DR. MATSON: The care that we implement at that stage is really is very supportive in terms of holding feeds, antibiotics, bringing the suction tube into the stomach, getting frequent x-rays, getting the surgeons involved to help follow the infants, and in many ways, the time that we’re diagnosing these infants at this point is the process is already much too far ahead. STEPHANIE: It’s definitely a complex disease, and I know that with Morgan, I think within a span of five hours or so he was diagnosed and in and out of surgery and in recovery, so I know that it’s a rapid time frame. But I appreciate all of the information that you shared with us today—I think you’ve given a really good perspective on causes and signs and symptoms, and if there is anything else that you’d like to add in any area for parents that might be listening to this from your perspective as a doctor talking to parents, please feel free. DR. MATSON: Sure, so I could mention just a little bit more about prevention of Necrotizing Enterocolitis. In some diseases, an ounce of prevention’s worth a pound of cure. When we’re looking at certain populations in the NICU, we often classify premature infants according to their weight. Those at highest risk of developing Necrotizing Enterocolitis are what we would refer to as very low birth weight infants, and those are less than 1500 grams at birth. STEPHANIE: And that’s about three pounds? DR. MATSON: Yes, pretty close to that. And I had mentioned efforts to prevent prematurity is a major goal, also diet. The American Academy of Pediatrics came out with a statement in 2012 really encouraging the provision of human milk to all of these babies. We do know that human milk does help protect against Necrotizing Enterocolitis. And if mom’s milk is not available for these infants, many units including ours are now using pasteurized donor human milk. It’s a very safe product, and that has been shown to help as well. Other potential preventative measures is—one would be using a standardized feeding protocol. There is very good data on that. That means really sort of having a very strict protocol for each size baby and how much milk you start with with the feeds, how rapidly you advance them, and what sort of warning signs that the healthcare team should be observing for. So that has been shown to be very important. Limited use of antibiotics appears to be very important. It’s a difficult task for us while we’re inside the Newborn Intensive Care Unit because these babies are at such high risk for infection. But one of the things that data has shown is that the more antibiotics, the more unnecessary antibiotics, that these babies receive increases their chances of getting Necrotizing Enterocolitis, so that probably relates to overgrowth of gram negative and other bacteria inside the intestine that activate the inflammatory cascade. There’s a few interesting other preventative measures that are topics of conversation within our field and one is using probiotics. There is good data out of other countries. So, I should say that probiotics are live bacteria. They’ve been using older children and adults for some time for various reasons. Bifidobacterium and Lactobacillus are the most common probiotics. Those are bacteria that are typically found in the stool of breastfed infants. And many units outside of the United States are now giving these probiotics, which they’re giving them to extremely premature infants in an effort to prevent NEC from happening. And the thought is that these help to prevent some of the pathogenic bacteria from growing, they also help to mature the intestinal barrier inside the intestine. At this point in time in the United States, however, there has not been a—at least to my knowledge—there has not been a properly randomized, controlled trial to study these here. And also another major issue using probiotics in the United States is how are they regulated by the FDA as they’re considered a food. So really you can go to GNC or CVS to buy probiotics over the counter. So with that type of designation by the FDA, they don’t have the same oversight as a drug would, and one of the concerns with many of the NICUs in using a product like that is it doesn’t have the same consistent quality oversight, meaning that we don’t know how pure it is or how consistent the actual dose would be that we’re giving to premature infants, so hopefully some research down the line will help answer those questions. STEPHANIE: Well, I think you’ve given us a lot of information, a lot of really good information I think, and a lot of really relevant information for parents that will be listening. So I really appreciate you sharing your time with us, and joining us today. And so with that, I will let you go. And… DR. MATSON: Okay, well thank you very much. STEPHANIE: we will talk again. DR. MATSON: Sounds great. STEPHANIE: Thank you. DR. MATSON: Okay, take care Steph. STEPHANIE: Thank you. STEPHANIE: For more information about Dr. Matson and his research in NEC, visit: connecticutchildrens.org. A direct link can also be found in this episode’s show notes: http://www.connecticutchildrensfoundation.org/document.doc?id=402 In closing, I’d like to share a few thoughts about today’s conversation with Dr. Matson. One of Morgan’s former doctors described NEC to me as “an inflammatory response gone haywire.” That simple, but vividly descriptive, phrase gave me pretty quick understanding of the disease that nearly took my son’s life. The inability of a very premature baby to regulate their immune response, and in turn their inflammatory response, appears to be a crucial factor in the development of NEC. And as Dr. Matson mentioned, understanding not only how diet and exposure to medications affect the bacterial populations inside the intestine, but also understanding the immune signaling inside the intestine and what’s ultimately controlling the inflammatory process are critical to fully understanding, and preventing, NEC. Show your support for our smallest and most fragile babies, those who have the greatest risk for developing NEC. Show your support for continued research in NEC. And join our effort to raise awareness about, and funds for research in NEC by making a donation to Morgan’s Fund at morgansfund.org/donate. If you’ve had a personal experience with NEC and would like to share your story, or have a question or topic that you’d like to hear addressed on our show, e-mail us at feedback@morgansfund.org. We’d love to hear from you! Additional Information You can make a donation directly to Dr. Matson’s research in NEC at Connectiut Children’s Medical Center by visiting https://www.connecticutchildrensfoundation.org/giving/nec Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

Stephanie shares how her son Morgan’s experience with Necrotizing Enterocolitis was the catalyst for not only founding The Morgan Leary Vaughan Fund but also developing and producing the Speaking of NEC: Necrotizing Enterocolitis series. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. Welcome to Speaking of NEC: Necrotizing Enterocolitis—a free, audio podcast series about Necrotizing Enterocolitis or NEC. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at www.morgansfund.org Hello, my name is Stephanie Vaughan. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. Welcome to our show. As a prologue to this series, I would like share with you a little bit about Necrotizing Enterocolitis, and how my son Morgan’s experience with NEC led our family to found a public charity dedicated to NEC, and in turn, develop and produce Speaking of NEC as our charity’s cornerstone educational initiative. My twin sons Shaymus and Morgan were born on October 29, 2010 at 28 weeks, one day gestation—nearly three months early— each weighing less than 2.5 pounds. At 4 days old, Morgan had to be transferred to Yale-New Haven Children’s Hospital when the doctors at Bridgeport Hospital suspected that he had developed Necrotizing Enterocolitis or NEC, an inflammatory disease that leads to necrosis or death of the intestine. Shaymus remained at Bridgeport Hospital. NEC is predominately due to prematurity and its statistics are startling: NEC is the second leading cause of death in premature infants. NEC is the 10th leading cause of infant death overall. In the United States alone, NEC occurs in approximately 25,000 babies per year. All newborn infants born preterm (before 37 weeks of pregnancy) or born with a low birth weight (less than about 5.5 pounds) are at increased risk for NEC. The smaller the infant or the more premature the delivery, the greater the risk. For very low birth weight babies like Morgan, who weigh less than about 3 pounds, the chance of developing NEC is approximately 1 in 18, and Infants with the most serious form of NEC have a 1 in 4 chance of dying. (Sources: UC Davis Health System, CDC/NCHS, APSA and NICHD.) Recently, one of the doctors at Bridgeport Hospital described NEC to me as “an inflammatory response gone haywire.” Once at Yale, Morgan underwent emergency surgery. He had one perforation in his small intestine, and five smaller areas that were about to perforate. Approximately eight inches of his small intestine were resected or removed. For his age and size, that was equal to approximately 20% of his small intestine. Immediately after Morgan’s surgery, the surgeon came into the waiting room, sat down across from my husband and me, and began to explain how the surgery went and what we could expect for Morgan’s recovery. Morgan was “very sick,” sicker than the doctors had thought, but had tolerated the surgery well and the surgeon was optimistic about his recovery. In another 6–8 weeks, Morgan would need to have a second surgery to reconnect his intestine. One of the prerequisites for the anastomosis or reconnection surgery was for Morgan to weigh at least two kilograms (4 lbs., 6.5 oz). Morgan would need to double his birth weight before the surgeon would consider operating on him again. In the interim, he would have an ostomy pouch to collect eliminated stool and gas. We felt an overwhelming sense of relief when his surgeon performed a successful reconnection surgery. And we were thrilled to bring Morgan home to his brother on Valentine’s Day 2011—three weeks past his original due date. Before coming home, Shaymus spent 85 days in the Newborn Intensive Care Unit at Bridgeport Hospital; Morgan spent a combined 109 days in the Newborn Intensive Care Unit at Bridgeport Hospital and the Newborn Special Care Unit at Yale-New Haven Children’s Hospital. They are now happy, healthy four-year-olds. Because of Morgan’s and our experience, our family founded The Morgan Leary Vaughan Fund (Morgan’s Fund)—an all-volunteer, public charity dedicated to Necrotizing Enterocolitis. Our mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength. We know how lucky we are that Morgan not only survived but has also thrived since his bout with NEC, and this is our family’s way of paying it forward. The Morgan Leary Vaughan Fund was incorporated on Valentine’s Day 2012. It was a wonderful way to celebrate the first anniversary of Morgan's homecoming. On June 26, 2014, we reached our first major milestone when the IRS awarded us our 501(c)(3) tax-exempt status, officially making Morgan’s Fund the first public charity dedicated to Necrotizing Enterocolitis. In December 2014, we applied for a grant from The Petit Family Foundation in Plainville, Connecticut. The project for which we applied was our cornerstone educational initiative—a free, audio podcast series about NEC. In late January 2015, we were awarded the grant funding. And today, February 28, 2015— in honor of Rare Disease Day, we are launching Speaking of NEC. Immediately after Morgan’s diagnosis four years ago, we began to research NEC and its causes and outcomes. We had questions not only about his recovery, but also about what his future would hold after he came home. We quickly learned that, for as common as this dangerous and often fatal disease is in premature babies, there was very little information about NEC available online. Our search led to more questions than answers. And the questions that kept coming up were: Why don’t more people know about NEC? What is being done to prevent NEC? Who is doing research in NEC? And, where is that research being done? It is our hope that Speaking of NEC: Necrotizing Enterocolitis provides you with some answers to those critical questions. Morgan’s Fund through its support of research, and with your help, hopes to change the lives of thousands of very low birth weight babies like Morgan, who have the greatest risk for developing NEC. To learn more about Morgan’s Fund, or make a donation, visit our website at www.morgansfund.org/donate On behalf of all of the babies like Morgan, and families like ours, who have been directly affected by NEC, thank you for listening. To more information, contact us at www.morgansfund.org/itunes Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

Presented by - Martin L. Blakely, MD, MS

Presented by - Martin L. Blakely, MD, MS

Dr. Gail E. Besner discusses her manuscript Heparin-binding EGF-like Growth Factor Increases Intestinal Microvascular Blood Flow in Necrotizing Enterocolitis. To view the print version of this abstract go to http://tinyurl.com/l4w7ew