Tanisha tells a story of strength and perseverance as her son Jaleel was born with a lower urinary tract obstruction. This story highlights the powerful ways Tanisha and her husband, Quentin work together as a team for Jaleel and their family. From her experiences in the NICU and beyond, Tanisha created a community to support NICU Medical Moms. [3:52] The journey to motherhood for Tanisha [6:13] Learning that Jaleel had a lower urinary tract obstruction at her 20 week anatomy scan [9:30] How Tanisha's husband helped her feel included in Jaleel's care [14:16] Healing is on-going for Tanisha and her family [18:39] She describes how she had the urge to walk one evening and the next morning learned she was in labor [20:35] Jaleel was born and was immediately rushed to the NICU for respiratory issues [22:57] Tanisha explains the emotional reunion in the NICU [24:51] Her husband advocated for Tanisha become involved in Jaleel's care to connect with him [26:49] Tanisha shares how she went into learning mode to not be stressed [28:42] Child Life specialists put up pictures of Jaleel's progress in the NICU and decorated his room the theme of his nursery [31:33] Getting a G-Tube was key to getting Jaleel ready for transplant [33:30] Moral support from Mom to Mom was key for Tanisha [37:43] Tanisha shares how she was enrolled in her Master's Degree program and how she was supported by faculty [42:00] Tanisha shares how she feels she is getting to live her dream in a new way [45:24] How Child Life Specialists shaped Jaleel's interest in music Connect with Tanisha: Medical Moms of NICU Facebook Group 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. Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.
This episode features a conversation with my guest, Dr. Chavis Patterson. Dr. Chavis Patterson is an Associate Professor of Clinical Psychology in Psychiatry at the Perelman School of Medicine at the University of Pennsylvania. He is also the Director of Psychosocial Services in the NIICU. He provides care to the families as they cope with the complexities associated with having a child in the NIICU. Partnering with the interdisciplinary team, he functions as an administrative leader, educator and researcher. He has presented at national & international conferences and published numerous articles.He is a member of the National Perinatal Association, the National Network of Neonatal Psychologists, the Marcé Society of North America, the Society of Pediatric Psychology, and the Association of Black Psychologists, Delaware Valley Chapter.As always, thank you for spending your Wednesday with us!You can visit the Welcome To Fatherhood website for more information. Theme MusicDreamweaver by Sound ForceFrom Premium BeatShow MusicThat Corner in Harlem by Sam BarshInternet Gold by Ghost BeatzRetrograde by LunarehFrom Soundstripe
TALMUD TORAH: Paul & Kathy Pollack in honor of their grandchildren, Tikva Esther, Simcha, Avigayil, Milana and Milicenta. May they grow to become the best version of themselves. Suburban Orthodox Toras Chaim Daf Yomi Chevra in the merit of a complete and enduring refuah for Yehuda Ben Michal. WEEK OF LEARNING: Gail & Doug Stanger - Mazel Tov to Akiva Leib Weinberg on his Bar Mitzvah from his Bubbie and Safta. DAY OF LEARNING Leah Sol In memory of Raymond Smith's beloved sister Tamie Polansky z'l DAF YOMI: Milton & Melanie Gertner in honor of their granddaughter Lucy (Esther Fruma) Dolitsky's 1st birthday. She came into the world quite early and had an extended stay in the NICU, but she is Baruch Hashem growing beautifully. May she grow to be a source of pride and nachas to her parents and all of Klal Yisrael. Saeed and Sima Haken for refuah Shelema to Barooch Fishel Ben Rachel the surgery is tomorrow If you would like to sponsor a shiur, please contact our office at email@example.com.
In episode 326 Hayley takes us through her first pregnancy where her baby was in a frank breech position (bottom down) at 36 weeks. She listened to the breech episode with Dr Andrew Bisits that features in The Birth Class and promptly arranged to see him for a consultation. After an ECV to turn her baby was unsuccessful, Hayley confidently prepared for a vaginal breech birth with the support of her partner and her midwife-in-training sister. Baby Pippa needed breathing support in the NICU for five days after birth but has made a full recovery.
As always, feel free to send us questions, comments or suggestions to our email: firstname.lastname@example.org. 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!_____________________________________________________________________________________Show notes and articles can be found on our website: www.the-incubator.org/082/This episode is sponsored by Chieisi
Join me and my guest and close friend, Heather Bazemore from @holisticnursebaze, as we discuss all things lactation, prenatal education, and breastfeeding. In today's episode we will be discussing: + What led Heather to be an IBCLC (her breastfeeding journey) + Why prenatal education is important + Who needs lactation support and education + When should you reach out to a lactation consultant + Why breastfeeding can be difficult & so much more! Bio of my guest: Heather is a former RN, NICU nurse for 4 years turned private practice IBCLC for the past 2.5 years with another 1.5 years of IBCLC work within the medical system. She is a wife and mother to one and like I already mentioned an amazing friend to me! She volunteers for NC Freedom Keepers as a research admin due to her many years of occupational safety work as well as her RN & IBCLC training and education. She is also currently on track to be a Functional Medicine Health Coach soon and we are all so proud of her for continuing to use her knowledge to help others! @holisticnursebaze Bio of myself: Marisa is the doula and childbirth educator behind Roaring Motherhood. I have been married for 8 years and mother to 3 blessed boys. Christ has placed upon my heart, a calling, that encourages women to get back to having him in the center of it all. We can create positive change in the birth world by nurturing, educating, and healing ourselves through an informed and faith-filled lens. @roaringmotherhood roaringmotherhood.com Info@roaringmotherhood.com If you're local and want to discuss my doula services, please go to https://www.roaringmotherhood.com/contact If you are not but still want to see my other services, please go to https://www.roaringmotherhood.com/free-consult-and-other-services I am currently accepting applications for my Birth Worker Mentorship program! To learn more, go here! Deadline August 31st, 2022. Classes start September 3rd, 2022. We are called as women and mothers to boldly proclaim the truth. I believe that it is important to speak up and fight for the ways in which God has called us to be here on Earth. I pray you will open your heart and minds when listening in today! Blessings, Marisa! --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/theroaringmotherhoodpodcast/support
Katrina discusses her preterm birth with her son, Bryce, and how the NICU can precipitate anxiety. Katrina also shares how her experience of bringing home a medically fragile baby impacted her anxiety, and which resources she found most helpful throughout her journey. - The NICU is hard. We're here to help. Hand to Hold® is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby's NICU stay. NICU support is available at no cost to NICU parents in English & Spanish. Learn more or get support at handtohold.org Follow Hand to Hold: facebook.com/HANDtoHOLD Instagram: @handtohold Twitter: @NICUHandtoHold
Dr Maher attended medical school at the University of Maryland and stayed there for a pediatric residency and chief residency. He then attended the University of Michigan for a fellowship in pediatric cardiology. Following fellowship, he joined the faculty at Thomas Jefferson University/Nemours Children's Hospital in Wilmington DE. He received additional critical care training there with Dr Russel Raphaely and Dr William Norwood. He joined the program at Emory University/Children's Healthcare of Atlanta in 2004 where he serves as executive director of the cardiac intensive care unit and is a professor of pediatrics at Emory University. His research involves the application of new technology to pediatric cardiac care, medical device development, and innovation in pediatrics. Dr. Hamrick completed her medical school and pediatric residency at UNC- Chapel Hill. She pursued her neonatology fellowship at UCSF, and then stayed on faculty there for a few years before joining Emory/Children's Healthcare of Atlanta in 2006. Her research interest focuses on brain injury/neuroimaging in congenital heart disease, which is what originally led her to spend significant time in the CICU. She attends in the surgical NICU at Egleston Children's Hospital in Atlanta, where she serves as Medical Director. Find out more about Shannon and Kevin and this episode at: www.the-incubator.org______________________________________________________________________________________As always, feel free to send us questions, comments or suggestions to our email: email@example.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. enjoy!This podcast is proudly sponsored by Chiesi.
After Andy died, many well meaning people had all sorts of ideas of things that we could do in his memory. People encouraged me to go to our state capitol to work on registration to combat distracted driving. People recommended scholarships to be made in Andy's name, plaques to help remember him. Everyone seemed to have a different idea and they were all good ideas, but just because someone has a good idea does not mean it is the right fit for me and how my family wants to remember our Andy. After time, I knew that I was called to remember Andy through the making of a podcast. When Carrie's young son, Jackson, died, she and her husband knew that they wanted to do something to help keep Jackson's memory alive as well. After thinking through a huge number of options, they felt called in one specific direction. Young Jackson had spent all of his 10 month long life in the NICU. During that time, Jackson's mom had worked hard to make his NICU room a home. It was his own little nursery right there in the hospital. His parents wanted to spend as much time as they could with him. During just the first month of his life, they paid $2000 in parking fees. They learned over all of these months that there were parents who could not afford the parking and therefore would not be able to visit their babies as often as they would have wanted. Additionally, parents who had premature babies born out in a suburban hospital, would ask doctors not to transfer their infant to Lurie Children's Hospital in Chicago because they knew they would not be able to afford the parking to go see them. It was heartbreaking for Carrie to see. After Jackson's death, Carrie and her husband saw an amazing opportunity to remember Jackson and help other parents all at the same time. The started the Jackson Chance Foundation (jacksonchance.org). They had a single goal - provide parking passes for NICU families to visit their infants. Carrie feels that this single goal is what has helped them be so successful. Their organization now supplies parking passes to NICUs in three different Chicago hospitals. They provide 90,000 daily parking passes each year. In this way, little Jackson and his family can help families make memories that might not have been possible without them. It is their special calling to remember Jackson and help others at the same time.
When her 6-year-old son Jace was born, they quickly recognized how difficult it was for him to breathe. A NICU stay, rare diagnosis, several intense surgeries, and 4 years later, they welcomed their second son Emmerson to the family. Once again, they were facing difficulty breathing, a NICU stay, and surgeries all caused by the same rare condition their older son has. In this episode, Chelsea tells these stories and share how hard it is to make big medical decisions for her children because, so little is known about the rare conditions they have. We also discuss how blindsided they were when their second was born with similar issues, and the way that emergent medical situations with her sons affect her. Links: Follow Chelsea on Instagram @thiselegantlife. Follow The Rare Life on Instagram @the_rare_life. Check out adorable photos of Chelsea + fam! A huge thank you to our sponsor Moog Medical. Access Moog's 24/7 live support for current users of their products like the Infinity Pump.
Our skin is an incredibly important, multifunctional organ. It has many different functions including helping us maintain our body temperature, it assists with the excretion of water and toxins, and most importantly, protective mechanism of acting as a barrier. But in newborns, especially preterm infants, there are developmental differences in the anatomy and physiology of their skin that place them at an increased risk for skin injury. Not only is the immaturity of an infant's skin problematic, but infants in the NICU are predisposed to skin trauma due to the life-saving monitors and equipment necessary for their care. Furthermore, infants with compromised skin integrity are at an increased risk for infection, excess water loss, absorption of toxic substances, and additional sequelae. On this episode, we review the basic anatomy of our skin and all of its important functions. We discuss how the skin of a term and preterm infants differs from adults and why the structural variations place infants at an increased risk for skin trauma and additional complications. The episode will be beneficial for parents of infants, especially preterm infants or those in the NICU to understand why their infant is at an increased risk for compromised skin integrity. NICU clinicians will also hear a great reminder of the anatomical and physiologic variations in infants that place them at an increased risk for skin injury. Our NICU Roadmap: A Comprehensive NICU Journal: https://empoweringnicuparents.com/nicujournal/NeoTech Free Samples: neotechneoshades.comNICU Mama Hats: https://empoweringnicuparents.com/hats/NICU Milestone Cards: https://empoweringnicuparents.com/nicuproducts/Empowering NICU Parents Show Notes: https://empoweringnicuparents.com/episode34Empowering NICU Parents Instagram: https://www.instagram.com/empoweringnicuparents/Empowering NICU Parents FB Group: https://www.facebook.com/groups/empoweringnicuparentsPinterest Page: https://pin.it/36MJjmH
Videos: How the US Stole Central America (With Bananas) – Johnny Harris HEALTH NEWS Black cardamom bioactives effective against lung cancer cells Soybean oil causes more obesity than coconut oil and fructose Why breast-fed premature infants have healthier guts than formula-fed ones Even simple exercise may help aging brain, study hintsSmall daily portion of Jarlsberg cheese may help to stave off bone thinning Body fat can send signals to brain, affecting stress response Black cardamom bioactives effective against lung cancer cells National University of Singapore, August 1, 2022 The main challenges associated with existing lung cancer drugs are severe side effects and drug resistance. There is hence a constant need to explore new molecules for improving the survival rate and quality of life of lung cancer patients. In Indian Ayurvedic medicine, black cardamom has been used in formulations to treat cancer and lung conditions. A team of researchers from the NUS Faculty of Science studied the scientific basis behind this traditional medicinal practice and provided evidence of the cytotoxic effect of black cardamom on lung cancer cells. The research highlighted the spice as a source of potent bioactives, such as cardamonin and alpinetin, which could be used in the treatment or prevention of lung cancer. The study is the first to report the association of black cardamom extract with oxidative stress induction in lung cancer cells, and compare the spice's effects on lung, breast and liver cancer cells. The findings could potentially lead to the discovery of safe and effective new bioactives which can prevent or cure cancer formation. The research was first published in the Journal of Ethnopharmacology. Black cardamom is typically used in Asian households in rice preparations, curries and stews either as a whole spice or in powdered form. The spice is also prescribed in Indian Ayurvedic medicine in powder form where it is used for conditions such as cough, lung congestion, pulmonary tuberculosis, and throat diseases. In the NUS study, black cardamom fruits were powdered and sequentially extracted with five types of solvents, including organic solvents and water. This allowed the researchers to evaluate the best solvents to extract the most potent actives in the fruit. The various types of black cardamom extracts were then tested for their cytotoxicity against several types of cancer cells. These included cancer cells from the lung, liver and breast. Among the three types of cells, lung cancer cells were least likely to survive when tested with the black cardamom extracts. Soybean oil causes more obesity than coconut oil and fructose University of California at Riverside, July 22, 2022 A diet high in soybean oil causes more obesity and diabetes than a diet high in fructose, a sugar commonly found in soda and processed foods, according to a published paper by scientists at the University of California, Riverside. The scientists fed male mice a series of four diets that contained 40 percent fat, similar to what Americans currently consume. In one diet the researchers used coconut oil, which consists primarily of saturated fat. In the second diet about half of the coconut oil was replaced with soybean oil, which contains primarily polyunsaturated fats and is a main ingredient in vegetable oil. That diet corresponded with roughly the amount of soybean oil Americans currently consume. The other two diets had added fructose, comparable to the amount consumed by many Americans. All four diets contained the same number of calories and there was no significant difference in the amount of food eaten by the mice on the diets. Thus, the researchers were able to study the effects of the different oils and fructose in the context of a constant caloric intake. Compared to mice on the high coconut oil diet, mice on the high soybean oil diet showed increased weight gain, larger fat deposits, a fatty liver with signs of injury, diabetes and insulin resistance, all of which are part of the Metabolic Syndrome. Fructose in the diet had less severe metabolic effects than soybean oil although it did cause more negative effects in the kidney and a marked increase in prolapsed rectums, a symptom of inflammatory bowel disease (IBD), which like obesity is on the rise. The mice on the soybean oil-enriched diet gained almost 25 percent more weight than the mice on the coconut oil diet and 9 percent more weight than those on the fructose-enriched diet. And the mice on the fructose-enriched diet gained 12 percent more weight than those on a coconut oil rich diet. Soybean oil now accounts for 60 percent of edible oil consumed in the United States. That increase in soybean oil consumption mirrors the rise in obesity rates in the United States in recent decades. During the same time, fructose consumption in the United States significantly increased, from about 37 grams per day in 1977 to about 49 grams per day in 2004. The UC Riverside researchers also did a study with corn oil, which induced more obesity than coconut oil but not quite as much as soybean oil. They are currently doing tests with lard and olive oil. They have not tested canola oil or palm oil. Why breast-fed premature infants have healthier guts than formula-fed ones University of Maryland School of Medicine, August 2, 2022 Human breastmilk has long been considered “liquid gold” among clinicians treating premature infants in a newborn intensive care unit (NICU). Breastmilk-fed “preemies” are healthier, on average, than those fed formula. Why is that true, however, has remained a mystery. New research from the University of Maryland School of Medicine's (UMSOM) Institute for Genome Sciences (IGS), found it is not just the content of breastmilkthat makes the difference. It is also the way the babies digest it. The research, led by Bing Ma, Ph.D., Assistant Professor of Microbiology and Immunology at UMSOM and a researcher at IGS, discovered a strain of the Bifidobacterium breve bacteria or B. breve in the guts of breastfed babies who received higher volumes of breastmilk than their counterparts. Those preemies had better nutrient absorptionbecause they developed an intact intestinal wall one week after birth. B. breve was much less prevalent in both formula-fed babies and breastfed babies with “leaky gut.” Babies with leaky gut do not develop a barrier to protect against bacteria and digested food from getting into the bloodstream. For the first time, the team also found that the way B. breve metabolizes breastmilk keeps breastfed babies healthier and allows them to gain weight by strengthening their underdeveloped intestinal barrier. An immature or “leaky” gut can lead to necrotizing enterocolitis (NEC), which is the third leading cause of newborn death in United States and worldwide. In fact, NEC impacts up to 10 percent of premature babies with a devastating mortality rate as high as 50 percent. At the most basic level, the gut microbiome in these breastfed preemies with more B. breve metabolizes carbohydrates differently than it does formula. The researchers say they hypothesize that this process of metabolism then strengthens and matures the intestinal barrier faster, protecting fragile newborns from disease. Even simple exercise may help aging brain, study hints Wake Forest School of Medicine, August 1, 2022 New research hints that even a simple exercise routine just might help older Americans with mild memory problems. Researchers recruited about 300 sedentary older adults with hard-to-spot memory changes called mild cognitive impairment or MCI—a condition that's sometimes, but not always, a precursor to Alzheimer's. Half were assigned aerobic exercises and the rest stretching-and-balance moves that only modestly raised their heart rate. After a year, cognitive testing showed overall neither group had worsened, said lead researcher Laura Baker, a neuroscientist at Wake Forest School of Medicine. Nor did brain scans show the shrinkage that accompanies worsening memory problems, she said. By comparison, similar MCI patients in another long-term study of brain health—but without exercise—experienced significant cognitive decline over a year. But the results suggest “this is doable for everybody”—not just seniors healthy enough to work up a hard sweat, said Baker, who presented the data Tuesday at the Alzheimer's Association International Conference. “Exercise needs to be part of the prevention strategies” for at-risk seniors. Small daily portion of Jarlsberg cheese may help to stave off bone thinning Norwegian Research Council, August 2, 2022 A small (57 g) daily portion of Jarlsberg cheese may help to stave off bone thinning (osteopenia/osteoporosis) without boosting harmful low density cholesterol, suggest the results of a small comparative clinical trial, published in the open access journal BMJ Nutrition Prevention & Health. The effects seem to be specific to this type of cheese, the findings indicate. Jarlsberg is a mild and semi-soft, nutty-flavored cheese made from cow's milk, with regular holes. It originates from Jarlsberg in eastern Norway. Previous research indicates that it may help boost levels of osteocalcin, a hormone that is associated with strong bones and teeth, but it's not clear if this effect is specific to Jarlsberg or any type of cheese. In a bid to find out, the researchers studied 66 healthy women (average age 33; average BMI of 24) who were randomly allocated to adding either a daily 57 g portion of Jarlsberg (41) or 50 g of Camembert cheese (25) to their diet for 6 weeks. At the end of this period, the group eating Camembert was switched to Jarlsberg for another six weeks. Jarlsberg and Camembert have similar fat and protein contents, but unlike Camembert, Jarlsberg is rich in vitamin K2, also known as menaquinone (MK), of which there are several varieties. Every six weeks blood samples were taken from all the participants to check for key proteins, osteocalcin, and a peptide (PINP) involved in bone turnover. Vitamin K2 and blood fat levels were also measured. Blood sample analysis showed that the key biochemical markers of bone turnover, including osteocalcin, and vitamin K2 increased significantly after 6 weeks in the Jarlsberg group. Glycated hemoglobin (HbA1c)—-the amount of glucose stuck in red blood cells—fell significantly (by 3%) in the Jarlsberg group, while it rose sharply (by 2%) in those eating Camembert. But after switching to Jarlsberg HbA1c fell significantly in this group too. Calcium and magnesium fell significantly in the Jarlsberg group but remained unchanged in the Camembert group. After switching cheese, calcium levels dropped in this group too, possibly reflecting increased uptake of these key minerals in bone formation, say the researchers. “Daily Jarlsberg cheese consumption has a positive effect on osteocalcin, other [markers of bone turnover], glycated hemoglobin and lipids,” write the researchers, concluding that the effects are specific to this cheese. Body fat can send signals to brain, affecting stress response University of Florida, July 23, 2022 The brain's effect on other parts of the body has been well established. Now, a group that includes two University of Florida researchers has found that it's a two-way street: Body fat can send a signal that affects the way the brain deals with stress and metabolism. While the exact nature of those signals remains a mystery, researchers say simply knowing such a pathway exists and learning more about it could help break a vicious cycle: Stress causes a desire to eat more, which can lead to obesity. And too much extra fat can impair the body's ability to send a signal to the brain to shut off the stress response. The findings are important and unique because they show that it's not simply the brain that drives the way the body responds to stress, said James Herman, Ph.D., a co-author of the paper and a professor in the department of psychiatry and behavioral neuroscience at the University of Cincinnati,. “It moved our understanding of stress control to include other parts of the body. Before this, everyone thought that the regulation of stress was mainly due to the brain. It's not just in the brain. This study suggests that stress regulation occurs on a much larger scale, including body systems controlling metabolism, such as fat,” Herman said. Researchers found that a glucocorticoid receptor in fat tissue can affect the way the brain controls stress and metabolism. Initially, such signals from the receptor can be lifesavers, directing the brain to regulate its energy balance and influencing stress responses in a beneficial way.
This week's podcast episode is part 2 of Kate's NICU journey with her twin girls, Remmy and Reese! In part 1 Kate shared about the twins' delivery and separation surgery, and in part 2 we hear more about the remainder of their NICU journeys and how they are thriving with their busy family at home.To the medically complex NICU mamas in our sisterhood, we hope you feel seen and heard throughout this episode. Know that this sisterhood sees you and honors your unique motherhood journey.To get connected with DNM: Website | Private Facebook Group | InstagramSupport the show
Short bio: Patrick McNamara graduated from Queens University Belfast in 1987, received his MRCPCH in Pediatrics in 1997 and Certificate of Completion of Specialist Training in Neonatal Medicine in 2002. He is currently a Staff Neonatologist, Director of the Division of Neonatology and Vice Chair for Inpatient Acute Care at the University of Iowa Stead Family Children's Hospital, and Professor of Pediatrics and Internal Medicine, University of Iowa. He is the current chair of the PanAmerican Hemodynamic Collaborative and Paediatric Academic Society Neonatal Hemodynamics Advisory. His clinical and research interests include myocardial performance in the settings of a hemodynamically significant ductus arteriosus, pulmonary hypertension and targeted neonatal echocardiography. Find out more about Patrick and this episode at: www.the-incubator.org________________________________________________________________________________________As always, feel free to send us questions, comments or suggestions to our email: firstname.lastname@example.org. You can also contact the show through instagram or twitter, @nicupodcast. Or contact Ben and Daphna directly via their twitter profiles: @drnicu and @doctordaphnamd. enjoy!This podcast is proudly sponsored by Chiesi.
Di's passion for teaching our new generation of nurses is evident in all she does. From her start in the Navy mentoring corpsmen to her Peds and NICU days as a bedside nurse, then managing a busy NICU and now as a nurse educator, she brings her knowledge and her gift for communication to a higher level. I love that she teaches her students to imagine their loved ones in that hospital bed, driving them to care for others empathetically. She told us ‘nursing is more than a job; it's a calling' and her work truly embodies that. Here is Dr. Dianthe Hoffman. For Di's contact info and book recs, visit https://theconversingnursepodcast.comhttps://www.instagram.com/theconversingnursepodcast/https://podcasts.apple.com/us/podcast/worklife-with-adam-grant/id1346314086
Dr. Erica Sood is a pediatric psychologist at Nemours Children's Health and an Associate Professor of Pediatrics at Sidney Kimmel Medical College of Thomas Jefferson University. She directs the Nemours Cardiac Learning and Early Development (LEAD) Program and trains psychology fellows in the specialty area of cardiac neurodevelopment. Her research focuses on partnering with stakeholders to develop and test family-based psychosocial interventions to promote family wellbeing and child developmental outcomes.Find out more about Erica and this episode at: www.the-incubator.org________________________________________________________________________________________As always, feel free to send us questions, comments or suggestions to our email: email@example.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. enjoy!This podcast is proudly sponsored by Chiesi.
În episodul de azi vorbim cu sociologul Adrian-Nicolae Furtună, despre cele două mari episoade care au marcat identitatea colectivă romă, sclavia și holocaustul. În prima parte a discuției, Nicu ne detaliază condițiile în care au trăit și muncit romii pe teritoriul României până la mijlocul Sec. XIX. Aflăm despre condițiile și etapele în care s-a abolit robia/sclavia în Moldova și Țara Românească, și despre personaje reale care au trăit și luptat pentru drepturile lor în această perioadă, în particular Ioana Tinculeasa Rudăreasa care s-a luptat în instanță pentru libertatea ei și a copiilor ei (cu victorie în final după 10 ani de procese). În a doua parte, mutăm discuția pe anii holocaustului și deportarea romilor în Transnistria de către guvernul Antonescu. Nicu ne povestește despre urmările – culturale și materiale – din prezent a celor două episoade, și cum acestea practic au “strivit” identitatea colectivă romă. === Re(Surse) Centrul Național de Cultură al Romilor–Romano Kher CNCR: http://cncr.gov.ro/ Platforma ikultura: https://ikultura.ro/ Adrian Furtună la podcastul Împreună https://youtu.be/uReTAw66x5E Piesa de teatru Kali Tras (Giuvlipen) https://giuvlipen.com/en/kali-tras/ Proiectul Obiceiul Pamântului (Decât o Revistă) https://www.dor.ro/obiceiulpamantului/ Documentar: O samudaripen andar i România [Holocaustul romilor din România] https://youtu.be/7_o4-luJRRI Docu-dramă: Lungul drum către libertate (CNCR) https://youtu.be/XAmR1NDNIfE Docu-dramă: În numele statului. Holocaustul romilor (CNCR) https://youtu.be/WuDOkoFPFIs AN Furtună, Rromii din Romania și Holocaustul, Dykhta! Publishing House (2018). https://www.goodreads.com/book/show/56443938-rromii-din-rom-nia-i-holocaustul-istorie-teorie-cultur https://www.academia.edu/37863362/Roma_from_Romania_and_the_Holocaust AN Furtună (Ed.) & VC Turcitu, Sclavia romilor și locurile memoriei–album de istorie socială, Dykhta! Publishing House (2021). https://bibliotecadesociologie.ro/download/furtuna-adrian-nicolae-ed-turcitu-victor-claudiu-2021-sclavia-romilor-si-locurile-memoriei-album-de-istorie-sociala-popesti-leordeni-dykhta-publishing-house/ AN Furtună (coord.), F Giurgea, V Negoi, B Chiriac, Deportarea în transnistria a familiilor soldaților romi. Între “greșeli” administrative și imperative biopolitice – studii de caz și documente de arhivă, Dykhta! Publishing House (2020). https://www.academia.edu/46960426/Deportarea_in_Transnistria_a_familiilor_soldatilor_romi_Intre_greseli_administrative_si_imperative_biopolitice_Studii_de_caz_si_documente_de_arhiva Artwork by Lizuka Dinu https://www.facebook.com/lizuka.dinu Cântecul Tsigayner Lid, de David Beigelman soundcloud: https://soundcloud.com/stonehill-collection/stonehill0095-tsigayner-lid Mulțumim The Center for Traditional Music and Dance's Stonehill Jewish Song Archive, pentru permisiunea de a folosi înregistrarea din arhiva lor. https://stonehilljewishsongs.wordpress.com/ Mai multe despre contextul istoric în care a fost compusă cântecul: https://holocaustmusic.ort.org/people/roma-and-sinti/ https://www.centrumdialogu.com/en/ghetto/history?view=article&id=49:gypsy-camp-in-litzmannstadt-ghetto&catid=20:zydzi-zachodni
We all know that teachers are underpaid, but they are also undersupported emotionally in times of pregnancy loss and postpartum difficulties. The need is great for bereavement and paid family leave. Join us to learn more about how change can happen for educators in our country. Jackie Mancinelli is a high school English and ESL teacher in New Jersey. She is the mother of two girls, ages 2 and 4, and had a son who passed away in 2016. She is the founder of Start Healing Together, a support organization for educators experiencing pregnancy loss and infertility, as well as the New Jersey ambassador for Count the Kicks. Jackie shares her personal story and the need for bereavement leave for teachers, both in instances of pregnancy loss and failed fertility treatments. Show Highlights: An overview of Jackie's story that began with her first pregnancy during her first year of teaching in 2014; it ended in a missed miscarriage when she was a few weeks along How her second pregnancy with her son went perfectly until about eight months along, when an emergency C-section sent her silent baby to the NICU–where he didn't survive How Jackie found support within her immediate family and from her best friend What it was like for Jackie in the 2-3 months following the traumatic loss of her son–and how therapy helped her learn new things about herself What it was like for Jackie to go back to teaching after losing her son How Jackie was prompted to get into advocacy work to help other parents through Start Healing Together How Start Healing Together works with school districts to provide resources and support for educators and help in contract negotiations regarding pregnancy loss, bereavement leave, fertility treatment, and adoption Current initiatives being pursued by Start Healing Together How you can help the ongoing lobbying efforts Jackie's advice to those experiencing a loss What Jackie learned through her pregnancy and loss experiences Resources: Connect with Jackie: Website, Instagram, and Facebook Visit my new website, www.wellmindperinatal.com, to get on the Interest List for the upcoming course. You'll receive notifications when the course is live, and after you sign up, you'll be able to watch or listen at your convenience.
Avroy A. Fanaroff, MD was the Gertrude Lee Chandler Tucker Professor and Chair of the Department of Pediatrics and Reproductive Biology at Case Western Reserve University School of Medicine. He also served as the Director of Neonatology and physician in chief at Rainbow Babies and Children's Hospital in Cleveland. He is currently Emeritus Professor Case Western Reserve University, and Eliza Henry barnes Chair of Neonatology. He is globally acknowledged as an international authority in the field of neonatology, and has contributed greatly to literature in the area of neonatal medicine, with particular focus on pulmonology, nutrition, and sepsis. He is co-editor of Fanaroff and Martin's Neonatal-Perinatal Medicine and Klaus and Fanaroff's Care of the High-Risk Neonate. Dr. Fanaroff has been recognized for his contributions to the field with numerous honors and awards, including the Apgar Award, the Professional Education Award and the National Neonataology Education Award from the American Academy of Pediatrics, and has been honored with an honorary fellowship from the Royal College of Pediatrics and Child Health in London and honorary doctorates from the University of the Witwatersrand (his alma mater) and the University of Turku, Finland.Find out more about Avroy and this episode at: www.nicupodcast.com________________________________________________________________________________________As always, feel free to send us questions, comments or suggestions to our email: firstname.lastname@example.org. You can also contact the show through instagram or twitter, @nicupodcast. Or contact Ben and Daphna directly via their twitter profiles: @drnicu and @doctordaphnamd. enjoy!This podcast is proudly sponsored by Chiesi.
Nakeenya Wilson, of Black Mamas ATX, discusses her own traumatic birth experience and how that led to PTSD and PPD. She talks about how she got involved with Black Mamas ATX and the services the nonprofit offers. She also discusses the statistics surrounding black mothers and PPD. - The NICU is hard. We're here to help. Hand to Hold® is a national nonprofit dedicated to providing neonatal intensive care unit (NICU) parents with personalized emotional support, educational resources and community before, during and after their baby's NICU stay. NICU support is available at no cost to NICU parents in English & Spanish. Learn more or get support at handtohold.org Follow Hand to Hold: facebook.com/HANDtoHOLD Instagram: @handtohold Twitter: @NICUHandtoHold
Meghan of Saskatoon, SK shares the pregnancy and birth story of her son Nolan on this episode. Her and her husband Mitch conceived quite quickly after only two cycles of trying and while Meghan thought she'd be very excited, she didn't initially feel that way. She talks about how her feelings evolved throughout her pregnancy and the anxiety she had surrounding birth, as well as the choice to hire a doula for birth support. Physically, Meghan also found the pregnancy to be quite difficult as she suffered with back and hip pain. A few weeks before her due date, Meghan's water unexpectedly broke in the night. Things took off from there and she shares how she coped with contractions and ended up having an unmedicated birth despite having expected she might want an epidural. Free to Be Mindful PodcastFocusing on Mindful Living, Mental Health & Personal Growth with Guided Meditations.Listen on: Apple Podcasts Spotify
In our field, we hear and use the word attachment so often. And, in the community of trauma-informed clinicians, I'd always felt like we had a deep understanding of what this word means. But when I sat down with Dr. Mara Tesler-Stein for the second time on The Zero Disturbance Podcast, we got to unpack the lack of understanding that lies within this concept for our clients... and possibly even for the folks in our clinical communities. A lot of research in the perinatal field suggests that we jump to a "disturbed attachment" diagnosis with our NICU babies. However, Mara helps redirect us to what she sees as the real key to fostering secure attachment for parents and children. And the answer is not so reliant on the NICU experience that the research suggests. In fact, it's actually quite simple. If parents of NICU babies are able to respond with attunement, responsiveness, and sensitivity, then secure attachment will find its way. And yes, that means that parents need to put in their own work, spending time reflecting on their own attachment behaviors and styles, but when that work is navigated, they're able to give their babies the secure attachment they so lovingly want to offer. And that's the magic in the trauma-informed therapy we offer our adult clients. This interview was a powerful reminder of how the narratives we create about parents or kids are sometimes an interpretation (or misinterpretation) of behaviors and urges. As we explored attachment and parenting throughout the lifespan, even touching on complex diagnoses such as neurodivergence, the vulnerable child, and RAD, Mara brought me "back to home base" in the NICU. Join us as we learn how to trust and listen to parents, help them create healthy narratives, and teach them what secure attachment actually looks like! You won't want to miss the clinical gold nuggets sprinkled throughout a beautiful conversation about the capacity to bond, attach, attune, and heal. --- Want to keep learning with us? You already have expertise that others need! Are you ready to teach others all that you know and change the world? We've got you. Check out The Consultation Kit to build your consultation services and diversify your income. --- Learn more about today's spotlight guest: Mara Tesler Stein, Psy.D., PMH-C is a clinical psychologist practicing in Chicago and Jerusalem. She is the founder and director of The Touchstone Institute for Psychotherapy and Training where she offers both EMDR Foundational trainings for perinatal specialists & advanced EMDR workshops which take a deeper dive into the intersections and applications of EMDR and perinatal mental health. Dr. Stein is a staunch advocate for trauma-focused care and is trained and certified in a range of integrative trauma therapies. A certified EMDR therapist, EMDRIA Approved Consultant and Trainer for the Institute for Creative Mindfulness, Dr. Stein is also certified in Emotion-Focused Family and Couple Therapy, is a Gottman Certified Therapist, and continues to pursue training in Clinical Hypnosis, Yoga-Informed treatment, Advanced applications of EMDR, Brainspotting, and Ego-State therapies. She is the co-author (with Deborah Davis, Ph.D.) of Parenting Your Premature Baby and Child: The Emotional Journey (Fulcrum, 2004) and Intensive Parenting: Surviving the Journey Through the NICU (Fulcrum, 2013). Her trauma work is grounded in her personal perinatal journey, which began 25 years ago taking her through infertility, twin pregnancy, prolonged hospital bedrest, the NICU, and years of raising NICU graduates. Learn more about Mara's training here. --- Learn more about Zero Disturbance: Zero Disturbance offers comprehensive resources for therapists on EMDR-informed clinical reasoning, intensive design, passive income systems, & teaching excellence. Ready to get started in the Zero Disturbance community? Access our favorite free resources in The Zero Disturbance Welcome Bundle, full of free videos and downloads to help you develop your clinical reasoning skills, as well as ways to feel like an intentional designer of high-value offerings like intensives and passive income. Use these free resources to make the seemingly impossible feel absolutely accessible! Ready to set up intensive therapy options in your practice? It's time to get you out of back-to-back, 50 minute sessions and experience real financial freedom. We supported hundreds of therapists make this successful transition, and are excited to help you, too! Design an intensive model that works best for you with The Intensive Design Kit! Ready to go all in and work with Kambria? You should be surrounded by life-long learners who are encouraging, learner-centered, and transparent about the success of their business as you build yours. All therapists are welcome, and EMDRIA hours available for those with EMDR focused practices. Whether you're seeking Certification, AC, or already a Consultant, we encourage you to get clinical and business strategies in The Consultation Program because there's nothing like it. With a Masters in Education from Vanderbilt, Kambria has been creating trainings and teaching adult learners for 20 years. As Director of Education and Quality Improvement at Stanford Medical School, her job was to decomplicate and consolidate complex systems and topics, thereby giving medical trainees successful learning experiences. Now, as a busy mom of fraternal twins, dedicated business owner of Zero Disturbance, and EMDRIA Approved Consultant, Kambria knows what it means to do things efficiently, effectively, and in a learner-centered way.
Guest: Cuyler Romeo, M.O.T., OTR/L, SCFES, IBCLC - In this course, our guest Cuyler, who is a PFD advocate extraordinaire, discusses the recent changes to best practices for NICU discharge for infants with a pediatric feeding disorder. She highlights updates from the National Perinatal Association, discusses common barriers to successful discharge, and best yet how we can engage in improved continuity of care for these little ones to set them up for long-term success.
Episode 119: #OnTheStacks in the blu door studio with Mary Vanesko, Founder and Owner of Well-Nurtured Development. Mary is a licensed and certified Occupational Therapist that provides services to infants, children, and their families with a holistic approach to family centered care. Before venturing down the entrepreneurial path and starting her own business, she worked at some of the most prestigious hospitals around the country including Thomas Jefferson University Hospital, CHOP, Stanford Hospital, and even served as a consultant to help build the level 2 NICU and rehabilitation program at USC Hospital. In this episode Mary talks about resiliency, mindfulness, personal and professional development, and creating and fostering connection. We also explore the term, "Neurodiversity," by discussing how we think of developmental disorders and ways we can help reduce stigma around learning and thinking differences to promote inclusion in society, schools, and the workplace. Watch the full episode here: https://youtu.be/OssLFVzERr0 Please enjoy! This episode is brought to you by Brrrn. Get 15% Off at thebrrrn.com with code "STACKS15" at checkout! #ad This episode is brought to you by blu door Financial. blu door Financial helps you save money and reduce taxes to live a fuller financial life. To learn more, visit blu door Financial at www.bludoorFinancial.com. #ad Engage with us on social media: Instagram, Facebook, LinkedIn, or visit us at www.OnTheStacks.com.
This week, we have the honor of hearing part 1 of Kate's NICU story with her conjoined twins, Remy and Reese! Throughout this episode, Kate shares about her high-risk pregnancy journey, her first moments with the girls and their NICU journeys leading up to their separation surgery, and also what it was like to get to know her girls not only as twins but also as as two new individual girls after their surgery.To any of our medically complex NICU mamas or mamas in our community who have experienced a high-risk pregnancy or an extensive NICU stay, we hope you feel heard and seen throughout this episode and that you marvel at how far both you and your miracle(s) have come.To get connected with DNM: Website | Private Facebook Group | InstagramSupport the show
Marissa had a singleton and twins who are NICU graduates and she's here to talk about early delivery and long NICU stays. She's getting into:-Her singleton she delivered before 28 weeks-Her twin girls she delivered at 24 weeks-Primary care nurses-Traumatic birth-Her online support group-Early intervention servicesResource: What Every Twin Parent Should Know About the NICUMarissa Fluture's InstagramSubscribe 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
Episode 80: "Yes, I Can Help Ukraine" - Part I JDK welcomes a special guest to the show, Tanya Zayka of the Ukrainian Association of Washington State, for a heartfelt and powerful discussion about the extensive relief efforts that are still underway to help the people of Ukraine as they continue to resist the brutal Russian invasion of their country. Tanya shares about growing up in Ukraine, her country's history, her relief projects and those of many other individuals. These include shipping winter clothing, medical supplies, and even NICU machines for newborns to war torn areas. It is both a sobering and inspiring series of stories, and Tanya also provides clear advice on how each of us can take simple steps that will literally save lives. Such action is urgent, as the need for aid in Ukraine is only growing.... Be sure to catch Part II of this important conversation with Tanya in next week's episode.
WHY Healthcare? E34 Inspirational stories, leadership styles, life lessons, pivotal moments, business tips, and more were shared on this episode of Collaborative Connections Radio Show and podcast, sponsored by KLM Consulting, Marketing, and Management. Host, Kelly Lorenzen was on-air with Judy Smith of Smith Hager Bajo, Inc., Madeline Frederick with Children’s Hospital Los Angeles (CHLA), […] The post WHY Healthcare? E34 appeared first on Business RadioX ®.
In today's episode Tony shares the 3 step process that has allowed him to constantly stay ahead in the social media game. Here's what we covered in this content rich conversion You'll learn the best way to come up with trending content. How often you should post and on what platforms. The key metrics to measure and what questions you should be asking your new patients to find out how they really heard about your practice. The biggest mistakes that chiropractors make with their communication that confuses the community and turns them away. And heaps heaps more. Enjoy the episode. Thanks for all you do. Keep saving lives. Angus Links: Website: www.premierwellnesschiro.com Facebook: Premier.Wellness.Chiropractic Join our Facebook Group: Pediatric Chiropractic Today Instagram: drt.pxkidchiro Bio: Dr. Tony Ebel is a Pediatric and Wellness Certified Chiropractor who specializes in and has extensive education, experience, and passion in neuro-developmental disorders and other special needs cases, as well as general pediatric, pregnancy, and family wellness care. Dr. Tony truly runs and operates his dream practice (one of the largest pediatric practices in the county) or what he also now terms “the practice of the future” for chiropractic. Partnering with Dr. David Jackson, Dr. Tony co-created the first ever online pediatric training program, Epic Pediatrics. He again joined with Dr. Jackson and his incredible practice-building and training program, Epic Accelerators, as an Epic Coach. Having himself benefited tremendously from his 3 years as an Epic Accelerator Client, it was time for him to simply turn around and “lend a hand up” to as many chiropractors as possible in this area as well. Tony's amazing wife Kristina keeps his craziness in check, three incredibly beautiful and gifted daughters Addison, Alaina, and Emilia, and an amazing little boy Oliver who himself went through “the perfect storm” spending 6 weeks in the NICU with a very grave prognosis of seizures and severe neurological damage and delays, only to come through that with zero seizures or developmental delays thanks to the early application of Pediatric Chiropractic. He is a health and wellness “junkie” who loves CrossFit, reading and learning, spending time with his family, and sports. See omnystudio.com/listener for privacy information.
As always, feel free to send us questions, comments or suggestions to our email: email@example.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!_______________________________________________________________________________________Show notes and articles can be found on our website: www.the-incubator.org/070-journal-club/This episode is sponsored by Chieisi
Danielle is riding solo this week as Jackie's is having technically difficulties under the Tuscan sun. Fortunately, she's joined by a dear friend, Christopher Romero, and the two reminisce on their days in the NICU. He talks about working on a Transport team and how it made him fall lout of love with nursing, then discusses his transition to CRNA school that made him rediscover his passion. He shares his favorite thing about CRNA school, and offers advice to anyone considering it. In light of the overturn of Roe v. Wade, Chris shares his strong desire to truly make a difference and provide pain management to people getting abortions, as well as members of the LGBTQ+ community wanting to undergo transition surgeries. While he feels like he's in a country that never wanted him, he's doing everything he can to support those around him. You can follow Christopher on Instagram @christopher.a.romero Thanks to our amazing sponsors! Check out these deals just for you: Vegamour — Go to VEGAMOUR.com/WOMED and use code WOMED to save 20 percent on your first order FIGS — Go to wearFIGS.com and use code WOMED to get 15% off your first order Goli — Go to go.goli.com/WOMED and you will be brought straight to the checkout page with their amazing discount already applied Binto — Go to mybinto.com, take the quiz and enter promo code womed for 20% off your first month If you haven't already, please follow, rate, and review the podcast, follow us on Instagram and Twitter @TheWoMed and check out womedpodcast.com. Plus, give us a follow on TikTok @thewomedpodcast. Submit your weekly Nurse D Energy, shoutouts, and Wo-No You Didn't moments to us on Instagram — we love reading and sharing them! Be sure to follow your hosts personally @dmmaltby and @jackiethefnp and be sure to check out @riothealers! WoMed Cover Art — Makeup: Annelise Carey, MUA/LME @annelisemua & Photography: Brooke Boling @honorcreative Learn more about your ad choices. Visit megaphone.fm/adchoices
About the guestAna Rodney is a practicing Doula for nearly 15 years, a yoga instructor, energy healer, and wellness practitioner based in Baltimore City. She's Executive Director, Founder of MOMCares and the Rising Mama, a wellness organization that centers mothers in the delivery of care and support to the entire family unit. Ana has spoken and led workshops throughout the Mid Atlantic Region of the United States; addressing audiences at Johns Hopkins Hospital, University of Maryland Medical System, Greater Baltimore Medical Center, and George Washington University. She is also a graduate of Morgan State University. Ana serves as a Board Member and historian for the BCIITY Alliance and board member for Maryland breastfeeding association. Ana is the Chair of the Baltimore City Maternal Mortality Review Board as well as a member of the Fetal Infant Mortality Review Board. Ana has been acknowledged by the Public Justice Center for her contributions and collaborations in Policy in Maternal Health. Ana is the recipient of the NARAL MD Prochoice Young Advocate award, OSI Community Fellowship, Warnock Foundation Award, along with other awards for her service to the mothers of Baltimore City. Most recently, Ana has been rewarded the Goldman Sachs One Million Black Women Impact Grant for MOMCares. Ana Rodney has served as a Perinatal Mental Health Consultant for the Baltimore City Health Department. Ana was named a Baltimore Homecoming Hero in 2019 and a Game Changer by Baltimore Magazine in 2021. Ana has a background in education, teaching in Baltimore city as an artist, Spanish and English co-teacher between 2006-2014. Finally and most importantly, Ana is mother to Aiden and Asher Rodney, ages 7 and 14 months, respectively.About MOMCaresMOMCares serves under-supported mothers with NICU experiences in Baltimore City by providing prenatal and postpartum doula care including transportation, advocacy, self-care opportunities, and nutritious meals to mothers and their families. Please consider making a donation to support our work by visiting momcares.org/donate.This interview is brought to you in part my the support of Innovation Works Baltimore.Innovation Works Baltimore is an innovative, collaborative resource network that connects neighborhoods, entrepreneurs, social innovation assets, and investors to build sustainable neighborhood economies in Baltimore.★ Support this podcast ★
In episode 243 of SYP, I have the privilege of talking with Kara Larson, MS, CCC-SLP, about her role as director of a team of 18 SLPs who work solely on pediatric feeding and swallowing. The post 243 – Pediatric Feeding and Swallowing: From the NICU and Beyond appeared first on Swallow Your Pride Podcast.
In this rebroadcast from 2020, Laura shares the story of birthing her fraternal twin girls, their NICU stay, and navigating breastfeeding. Show notes links: Know Your Options Online Childbirth Course Use code 100OFF for $100 off enrollment Beyond the First Latch Course (comes free with KYO course) Support The Birth Hour via Patreon!
For our 33rd podcast episode, I review the recommendations for screening and managing hyperbilirubinemia. The American Academy of Pediatrics recommends universal screening of bilirubin levels in newborns, so I review how that can be done, when it should occur, and when it should be repeated. We discuss which infants are more at risk for elevated bilirubin levels and how those risk factors contribute to guidelines for the treatment plan. I discuss the nomograms commonly used and recommended by the American Academy of Pediatrics that guide the care of identifying infants at risk as well as when they should be treated. I review phototherapy, the primary treatment plan for hyperbilirubinemia, including how it effectively lowers bilirubin levels as well as the clinical considerations that should be applied during treatment. Whether you are a neonatal clinician or a parent, this review on how to effectively screen for and manage hyperbilirubinemia will be beneficial. Hyperbilirubinemia is incredibly common in neonates. Clinicians who care for infants whether they are a term newborn in the nursery or an infant in the NICU, will manage infants with elevated bilirubin levels. And parents of either term, healthy infants, or those critically ill in the NICU, it is essential that you understand the risks of hyperbilirubinemia and the screening and management process for it. Tune in now to learn more!Our NICU Roadmap: A Comprehensive NICU Journal: https://empoweringnicuparents.com/nicujournal/NeoTech NeoShades Free Sample: neotechneoshades.comNICU Mama Hats: https://empoweringnicuparents.com/hats/NICU Milestone Cards: https://empoweringnicuparents.com/nicuproducts/Bilirubin Document: https://empoweringnicuparents.com/bili/Empowering NICU Parents Show Notes: https://empoweringnicuparents.com/episode33Empowering NICU Parents Instagram: https://www.instagram.com/empoweringnicuparents/Empowering NICU Parents FB Group: https://www.facebook.com/groups/empoweringnicuparentsPinterest Page: https://pin.it/36MJjmH
Welcome back to the Winner Takes All Special! This is our very last but very special guest. I'm so excited to highlight this woman and everything she has accomplished. Keep in mind, this is a special that we are going to be bringing back year after year, to highlight these women and their successes. Not only did they win their pro cards, but they are winning the overall title at these shows. Which is absolutely phenomenal! So let's talk bikini shall we?! Gaining confidence, strategy, feedback. We dive into all as we uncover the story behind this NICU nurse that won the overall at NPC Nationals. Learn what Brittany Gillespie did to make it to the top. Are you ready to find out what it takes to win the overall? What you'll hear in this episode: [4:30] Bikini Hack [12:00] Love for nursing [15:00] Getting started with bikini and combining it with nursing [17:00] How do you manage both? [18:45] How did you find competing in bikini? [20:20] What was different about your second season? [22:45] Plans after first nationals [24:00] Dealing with "a lack of fire" [25:20] Being more intentional and finding balance [29:30] What would you say to someone who is struggling to take time off the stage? [31:00] Major changes to physique during time off [35:10] Initial goals going into 2021 [37:00] Getting close to pro and how that affected prep [39:45] A lack of confidence and how that affected competing [43:00] How did you feel going into Nationals? [50:20] Winning overall and being shocked [54:10] Feedback from the judges [55:50] Improvements for 2022 [56:40] What do you think made you stand out? [58:40] Goals for 2022 [59:50] Rapid Fire Questions [1:02:08] Dear Diary Find Brittany on IG @britgillespiee ----->Head HERE for your FREEBIES, coupon codes, and other links! https://vibe-athletics.mykajabi.com/links
Not every twin has a living sibling—and Lily is an example of this tragic phenomenon. Her sister, Autumn, passed away at 24-weeks gestation, and she was born a few days later. In this episode, mom Jess shares the pain of losing a child and of the struggles that Lily has had because of her premature birth. Lily has a tracheostomy, is G-tube fed, and has damaged lungs due to her intubation during her 256-day NICU stay as she fought for her life. Lily almost died several times during her stay, but one time in particular has really stuck with her. Jess also opens up about the guilt she holds because of the clotting disorders which ultimately led to Autumn's death and Lily's prematurity. This is a rebroadcast of Ep. 37 of Season 3. Join us next time for Season 6's kickoff episode! Links: Listen to Jess' special topic epsiode about social media, released immediately after this one. Follow Jess on IG here: https://www.instagram.com/lilyslittlelungs/ Follow me on IG here: https://www.instagram.com/the_rare_life/ Still Apart of Us, a Podcast about Stillbirth, and Infant Loss: https://stillapartofus.com/
What's a Big Sis to do if her newborn baby brother cannot come home from the hospital immediately? Take a visit to the NICU!In this episode we have the immense privilege of chatting with neonatologist Dr Terri Major-Kincade about her new children's picture book, 'Big Sis Visits the NICU'. Dr Terri has had over 20 years of experience working in several NICUs (or Neonatal Intensive Care Units), taking care of babies who are born prematurely, or those who are too sick to be cared for at home. Having a child or sibling in the NICU can be a scary experience, but Dr Terri is passionate about making sure families (including siblings!) are able to stay actively involved and bond with their baby through that process. For more information about Dr Terri Major-Kincade and her books, or to book a speaking engagement, please visit www.drterrimd.comResources for NICU Parents:Below are some excellent resources that provide education, support and community for families who have a child in the NICU March of DIMES NICU Family Support (https://www.marchofdimes.org/baby/the-nicu-family-support-program.aspx)Hand to Hold(https://handtohold.org/nicu-family-support/nicu-family-support-groups/?gclid=Cj0KCQjw8amWBhCYARIsADqZJoWGmBdOau5_o91lvwkrWarLxroPO4zQuLd1Lg-UOufOZRr0agsCh14aAv80EALw_wcB)NICU Helping Handshttps://nicuhelpinghands.org/Graham's Foundationhttps://grahamsfoundation.org/PeekabooICU.nethttps://www.peekabooicu.com/
NANNcast host Jill Beck is joined by the authors of NANN's medication safety position statement to discuss safe medication practices in the NICU and how nurses can advocate for safer standards and conditions. NANN recommends a comprehensive approach to medication safety in the NICU that integrates technology, focused healthcare provider medication safety education, standardized medication process, and robust medication error reporting and prevention efforts. Medication Safety in the NICU Position Statement.
Link to the preeme+you website: https://angeleyehealth.comAs always, feel free to send us questions, comments or suggestions to our email: firstname.lastname@example.org. 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!________________________________________________________________________________________More information about Preemie+You can be found on our website: www.the-incubator.org/069-tech-tuesday-angeleye-health
For people with common health problems like diabetes or high blood pressure or high cholesterol, progress in pharmaceuticals has worked wonders and extended lifespans enormously. But there's another category of people who tend to get overlooked by the drug industry: patients with rare genetic disorders that affect only one in a thousand or one in two thousand people. If you add up all the different rare genetic disorders known to medicine, it's a very large number; Harry's guest this week, Charlene Son Rigby, says there may be as many as 10,000 separate genetic disorders affecting as many as 30 million people in the United States and 350 million people worldwide. That's a lot of people who are being underserved by the medical establishment.Rigby is the head of a new non-profit organization called Rare-X that's trying to tackle a systematic problem that affects everyone with a rare disease: Data. In the rare disease world, Rigby says, data collection is so inconsistent that each effort to understand and treat a specific disease feels like reinventing the wheel. For longtime listeners of the show, that's a familiar story. Time and again, Harry has talked with people who point out the harms of storing patient data in separate formats in separate silos, and who have new ideas for ways to break down the walls between these silos. Rare-X is trying to do exactly that for the rare disease world, by building what Rigby calls a federated, cloud-based, cross-disorder data sharing platform. The basic idea is to take the burden of data management off of rare disease patients and their families and create a single central repository that can help accelerate drug development.Harry talked with Rigby about the challenges involved in that work, how it gets funded, how soon it might start to benefit patients, and what it might mean in a near-future world where every child's genome is screened at birth for potential mutations that could lead to the discovery of rare medical disorders.Please rate and review The Harry Glorikian Show on Apple Podcasts! Here's how to do that from an iPhone, iPad, or iPod touch:1. Open the Podcasts app on your iPhone, iPad, or Mac. 2. Navigate to The Harry Glorikian Show podcast. You can find it by searching for it or selecting it from your library. Just note that you'll have to go to the series page which shows all the episodes, not just the page for a single episode.3. Scroll down to find the subhead titled "Ratings & Reviews."4. Under one of the highlighted reviews, select "Write a Review."5. Next, select a star rating at the top — you have the option of choosing between one and five stars. 6. Using the text box at the top, write a title for your review. Then, in the lower text box, write your review. Your review can be up to 300 words long.7. Once you've finished, select "Send" or "Save" in the top-right corner. 8. If you've never left a podcast review before, enter a nickname. Your nickname will be displayed next to any reviews you leave from here on out. 9. After selecting a nickname, tap OK. Your review may not be immediately visible.That's it! Thanks so much.TranscriptHarry Glorikian: Hello. I'm Harry Glorikian, and this is The Harry Glorikian Show, where we explore how technology is changing everything we know about healthcare.For people with common health problems like diabetes or high blood pressure or high cholesterol, pharmaceuticals has worked wonders and extended lifespans enormously.But there's another category of people who tend to get overlooked by the drug industry.And that's patients with rare genetic disorders.By definition, rare diseases are rare, meaning they might only affect one in a thousand or one in two thousand people. But here's the thing. If you add up all the different rare genetic disorders known to medicine, it's a very large number.My guest today, Charlene Son Rigby, says there may be as many as 10,000 separate disorders affecting small populations.And if you count everyone who has these conditions, it may add up to as many as 30 million people in the United States and 350 million people worldwide.That's a lot of people who are being underserved by the medical establishment.And Rigby is the head of a new non-profit organization called Rare-X that's trying to fix that.Now, there are a lot of rare disease organizations that are looking for a cure for a specific condition.Rigby actually came to Rare-X from one of those, the STXBP1 Foundation, which is searching for a treatment for a rare neurological condition that affects Rigby's own daughter Juno.But Rare-X is a little different. It's trying to tackle a systematic problem that affects everyone with a rare disease. The problem is data.Rigby says that in the rare disease world, data collection is so inconsistent that each effort to understand and treat a specific disease feels like reinventing the wheel. For longtime listeners, that'll be a very familiar story.Time and again I've talked with people who point out the harms of storing patient data in separate formats in separate silos, and who have new ideas for ways to break down the walls between these silos. Rare-X is trying to do exactly that for the rare disease world, by building what Rigby calls a federated, cloud-based, cross-disorder data sharing platform.The basic idea is to take the burden of data management off of rare disease patients and their families and create a single central repository that can help accelerate drug development.I talked with Rigby about the challenges involved in that work, how it gets funded, how soon it might start to benefit patients, and what it might mean in a near-future world where every child's genome is screened at birth for potential mutations that could lead to the discovery of rare medical disorders.Here's our full conversation.Harry Glorikian: Charlene, welcome to the show.Charlene Son Rigby: Thanks. Nice to be here, Harry.Harry Glorikian: So I've been reading about what you guys are doing. I mean, all of it sounds super exciting. I'm, you know, been looking into this space for a long time from a rare disease, but many different angles of it. But can you just start off, tell us a little bit about yourself and how you got active in this world of rare disease research?Charlene Son Rigby: Yeah, thanks for that question. So I've spent most of my career building scalable software solutions for analyzing big data, and that's been both in health care as well as enterprise software. And so I'm now the CEO at Rare-X where we're building a platform to analyze rare disease data cross-disorder. And prior to being at Rare-X, I was the chief business officer at a company called Fabric Genomics, where we developed artificial intelligence approaches to speed diagnosis of patients through genomics. We had a considerable focus on rare disease and contributed to projects like the 100,000 Genomes Project and also the work that Stephen Kingsmore is doing at Rady Children's with diagnosing critically ill newborns in the NICU. And so when I started at Fabric, my daughter Juno was ten weeks old. She's my second child. And it was kind of a fortuitous timing, in some ways kismet, because at when I started at Fabric, I didn't know that she was going to start experiencing issues with her development. But at around four months she started missing milestones. And that started us on a three and a half year journey to find an answer to what was going on with her. And so during that time, we went through many, many tests, including genetic tests, MRIs, all kinds of all kinds of things, and everything kept coming back as negative or inconclusive. And so I was working at a genomics company, and so I kept pushing for whole exome testing, which at that time was still not, not readily available clinically and by insurance was still considered experimental. So we were denied three times, until we finally were able to get authorization in 2015. And so in early 2016, we got my daughter's diagnosis and she has a mutation in a gene that's involved in communication between neurons and the genes called STXBP1.Charlene Son Rigby: And so it's very rare. Thirteen kids born a day somewhere in the world. So thinking about Juno and thinking about this from a science standpoint, that it was pretty interesting that when she was diagnosed because she didn't have a classic phenotype for STXBP1. So most kids, 90% of the kids have seizures. And she has more of the symptoms around developmental delay, low muscle tone, cognitive issues and delayed walking and motor issues. And, you know, this this kind of challenge around these atypical phenotypes, I think, is actually becoming much more common in disease generally, so in rare disease and also more broadly in more common conditions as we're really starting to understand kind of the true breadth of patients. So in terms of your original question about my journey through rare disease, so I went on to co-found the STXBP1 Foundation to accelerate the development of therapies for kids like my daughter. And then coming to Rare-X was really a kind of joining of my software background with my passion for rare disease and really wanting to do something more broadly for the rare disease community.Harry Glorikian: I have to tell you, like what you said, three and a half years, I'm like, oh, my God. Like, I would be I have so many stories. And like when I was at Applied Biosystems and, you know, we're doing all this work. It just boggles the mind that some of these things are not really readily available to help get over that diagnostic odyssey for especially parents, because you're going to do anything to help your child. I'm glad it's actually moving theoretically faster these days. I'm not sure if insurance has actually kept up, but we're, on the technology side, I know we're everybody's pushing the envelope now. But when we talk about rare disease and you did some of the numbers but we hear about these rare diseases, I think a lot of people think of like there's an n of 1, right? They assume that this disease only affects a tiny number of people. Right. Maybe just one or a handful worldwide. But I mean, the fact is, if you add up all these different rare genetic diseases that exist in the human population, the number of people is actually pretty big. I mean, can you sort of. Put that into some sort of scale for us in what you've seen.Charlene Son Rigby: Yeah, you're absolutely right. You know, rare disease is by definition rare. And so it's easy in some ways to be dismissive of a rare disease because, oh, it's only affecting a few people. And it's true that a single rare disease can affect a very small number of people, even down to the n of 1 case that you talked about. From a definition standpoint, so, in the US, rare disease is defined as a disease affecting fewer than 200,000 Americans. And in Europe, in the EU, it's defined as affecting no more than one in 2,000 people. So we even though for ultra rare or n of 1 diseases, we can be talking about a small number of people, or like in my daughter's disorder, we can be talking about low thousands, there are still thousands of rare diseases and the traditional number that we hear a lot is 7,000. So 7,000 rare diseases. Rare-X is about to come out with some research that indicates that there are over 10,000 individual rare diseases, and this is really due to our growing understanding of genetics. So previously we might have grouped together a set of disorders based on what the symptoms were like. But now we understand that those actually are due to a different genetic etiology or different cause at a genetic level. And so if you aggregate all of those people up, across those 10,000 rare diseases, you know, what we're looking at is one in ten, potentially one in ten people in the world. And so in the US that's about 30 million people and in total 350 million people worldwide. So it's really a huge number of people. And from an impact standpoint, it's staggering when you look at the impact from a health care standpoint and from an economic standpoint.Harry Glorikian: Yeah, I mean, if you can diagnose, I mean, if there is a way to treat someone, then you get to it faster. And the economic impact is huge and unfortunately, if there isn't, maybe it spurs a pharmaceutical company to, you know, start working on it or figure out a way to treat that patient better. But at least you, I always tell people, the better the diagnosis, the better the next step. I see people sometimes, it seems like they're throwing a dart, you know, and they're it's an educated guess, but it's not, you know, the accurate diagnosis that you'd like to have. So. But how and where, when was sort of Rare-X born and what are you trying to do with the organization? What do you want to fix?Charlene Son Rigby: Yeah. So Rare-X was a pandemic baby. The organization was started in early 2020 and I just joined the organization last year. But, you know, it's really been quite a journey being able to have the, launch the platform during COVID. And I know we can talk about that in a little bit, but the unsolved problem that we are working to address is really around collecting data for rare disease. And one might ask, well, why is this an issue? I'll give an example. From the early days of the STXBP1 Foundation. W e assembled our scientific advisory board and we got together for our first scientific meeting. And we were going to develop our roadmap so that that would guide our priorities in terms of scientific development. And we were all very focused on therapies. So my expectation going into the meeting was we were going to talk about all the mice models we were going to build. What did we need to do in the lab? How are we going to get to that first therapeutic candidate? And the number one priority that came out of that meeting was to build a prospective regulatory-compliant natural history study. And so it was a huge learning for me because if you look at the kind of canonical steps in terms of drug development, it's always preclinical and then you move into clinical. And what I think that kind of simple model misses is this foundational layer around the data that you need and the real kind of understanding of the symptoms and the disease progression that is critical to building effective therapies, developing effective therapies.Charlene Son Rigby: And so that's really what Rare-X was started to do, was to enable the gathering of this data, the structuring of this data and enable it to be shared and to do this at scale. So, cross-disorder. And there are several problems today that that make this challenging. And so maybe I can talk a little bit about that. There are three or four of these significant challenges. So today some of this data does exist, but it's often kind of trapped in data silos. So it was generated in an individual project that might have happened in academia or industry. And then the data is often really only accessible to the group that collected it. And in rare disease where we don't have that many patients, it really makes it challenging to create a kind of more comprehensive understanding and picture of the patients if that data is trapped in these individual silos. Charlene Son Rigby: Another challenge that that we've seen is the lack of usable data. So individual studies may not include the key data that's needed to drive drug development forward. So some of these data repositories, they might either be a symptom specific. So they're looking at a specific organ system that might have been of interest to that researcher. So they're an incomplete picture. Or some of these repositories or these registries were started by passionate parents. You talked about that, the urgency that one feels as a parent, that I feel as a parent. And the registry may have been structured or the questions may have been structured in a way that isn't necessarily immediately usable by researchers because of the fact that it was started by a parent who, like you, you might not have had a statistical analysis background, you might not have had a survey methodology background. And we so those can be challenges in terms of having the data be robust and usable later. Charlene Son Rigby: And then the other thing that can be challenging and probably is often the most challenging is, is especially in these very, very new diseases, there's no data, and it takes quite a bit of funding to start data collection. Often, often passionate parents are going around trying to get researchers interested in their disorder. But it's often that you have to have a little bit of data to get a researcher interested. And so this is a huge challenge in terms of implementing data collection. And the other thing that kind of underlies this is that patients often are not empowered in this process. And so that was a fundamental piece of the way that we've structured Rare-X and the way that we collect data and the way that we enable patients to participate in the process to power data collection.Harry Glorikian: Yeah. I mean, it's, you know, they make movies out of this, right? People trying to push this boulder up a hill. So, what are the new ideas that say Rare-X is bringing to the table? I mean, your organization has called for like, you know, the largest data collection and federated data system and analysis platform in rare disease. So, I think unpacking that statement because it's a big statement, right, of, you know, what are you doing to improve data collection? What do you mean by federated, for those people that are listening? And why is it important? A nd how will the platform enable better analysis of this rare disease data?Charlene Son Rigby: Yeah. Great question. From a design perspective, the one of the things that we wanted to do was make sure that the platform was cross-disorder. So a lot of registries are started for an individual disorder. And what we really wanted to be able to do was given that number of 10,000 diseases, how do we scale to support so many disorders to accelerate therapies? And so a fundamental design principle was to do that cross- disorder. The other piece of this is that we are focused on patient-reported data. So typically a participant will join the research program, create an account on the platform and they are either a patient or a caregiver of a patient and providing information on their symptoms. There is a lot of other data out there in the ecosystem that could come from other related registries, or it could come from clinical data, it could come from many different types of studies. And so we really want to enable the aggregation of or federation of that data. So you asked me to define that term. It really means bringing together multiple different data sets in a way that enables those data sets to be analyzed together. And I think, again, going back to this theme that for any individual rare disorder, there aren't that many patients. And so analyzing that data, kind of individually, we are really missing the opportunity to maximally use the data that's been contributed by rare disease patients. And I would even argue that it's a moral imperative for us to do that as a rare disease community, because we urgently need to move these understanding of these disorders forward in development of therapies as well.Harry Glorikian: I almost wish I could take all the companies I know doing this and put them there so the n goes up for everybody. But I know that there's all sorts of reasons that that doesn't happen. But, you know, when you were saying we're pulling in patient-reported data, you know, the first thing, and we talk a lot about this from different groups on the show is, you know, would a wearable or one of these other devices that are now available give you more granular, real- time information that might be valuable to this sort of study. And have you guys considered things like that?Charlene Son Rigby: T he short answer is yes, because the our desire is to really continue to expand the types of data that are collected. And the I think that the nice thing about mobile, mobile devices, wearables, is that it makes it very easy to collect that data. And so we have a partnership with Huma. They do work in the mobile space. And we're definitely continuing to evaluate where we can develop partnerships there. I mean, our goal overall is to de- burden patients and so that the, if we can do that in a way that additive to an overall body of research, then we're huge proponents of it. And I think that it's also important that we're really trying to create an open system. So our partnership model is a very, very open partnership model in terms of who we can work with.Harry Glorikian: Yeah, I had a really extensive conversation with the head of data sciences at WHOOP yesterday and you know, they're pulling in somewhere between 50 and 100 megabytes of data per patient per day. I shouldn't say patient -- per individual per day. Right. I was like, that's a lot of data. And she was, you know, the kid in a candy store because they're she's like, we can really see what's happening with people. And you can ask questions at a scale that you couldn't ask before. Like she was saying, you know, the last one of the things that we're working on publishing is 300,000 people. You couldn't imagine that in the world of, say, a clinical trial of 300,000 people are just going to, you know, and you have all the data, almost 24/7 on this person that's delivered by this device, which is sort of interesting, you know, place to be. So, you know, I know that you don't have 300,000 people in one in one area, but it'd be interesting to have that sort of 24/7 data available from these kids if you could, you know, get a device that would lend itself to that. But what stage is the company at in building the platform and you know, I guess the killer question is, when will drug developers or other researchers be able to start using it? If they already are, do you have any early success stories you can share?Charlene Son Rigby: Yeah, yeah. It's really a very exciting time at Rare-X. So the platform launched last summer and we have over 25 communities on the platform. And those encompass several hundred participants already. So we're really starting to see some exciting numbers in terms of in terms of participants. So we are launching our researcher portal at the end of Q2. So very soon. And at that point, any researcher, so academic researchers, pharma researchers, will be able to access the data and be able to utilize analytical tools to really interrogate the data. I'm excited that we also have launched our first sponsored program, and that's with Travere. They're supporting the homocystinuria community to start data collection, to start a registry. And we just launched that at the end of February.Harry Glorikian: So I want to. Jump back, like just talking through some of the biggest technical challenges along the way. I mean I know one of your goals is like interconnecting all these disparate data sources. But one of the issues that always comes up is how do you clean up that that existing data so that you can store it all the same way. And then obviously that enables somebody to then do the analytics right after that. But the biggest issue that I hear from a lot of people is, man, it takes a lot of effort to make sure that that data is cleaned up and put in the right place.Charlene Son Rigby: Yes, the data munging. Yeah. I mean, I think that that is really the, a significant challenge, because creating research-ready data and then harmonizing data sets is a huge amount of upfront work that has to happen before you can actually do any of the analysis and the data mining. So what we have done with the core data that's being generated within Rare-X is that we have mapped it to data standards. So we utilize standards like the human phenotype ontology, OMIM, HL7, so that the data that we're producing already is mapped to all of these generally utilized standards. And then we would if we were working on a federation project, the same thing would need to happen with these other data sets to really enable that type of integrated that type of integrated analysis. And you're right, it's it can be a very brute force effort in terms of doing it accurately. And that's why I think that it's really important from a from an industry perspective to really start adopting these standards and putting them into the base model, you know, for assuming just making the assumption up front that the data is going to be federated and utilized downstream. I think that kind of traditional studies, a lot of the scope was more really looked at in terms of what are we doing with the data today? And we need to be really thinking about from a lifetime perspective, how is this data going to be used?[musical interlude]Harry Glorikian: Let's pause the conversation for a minute to talk about one small but important thing you can do, to help keep the podcast going. And that's leave a rating and a review for the show on Apple Podcasts.All you have to do is open the Apple Podcasts app on your smartphone, search for The Harry Glorikian Show, and scroll down to the Ratings & Reviews section. Tap the stars to rate the show, and then tap the link that says Write a Review to leave your comments. It'll only take a minute, but you'll be doing a lot to help other listeners discover the show.And one more thing. If you like the interviews we do here on the show I know you'll like my new book, The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer.It's a friendly and accessible tour of all the ways today's information technologies are helping us diagnose diseases faster, treat them more precisely, and create personalized diet and exercise programs to prevent them in the first place.The book is now available in print and ebook formats. Just go to Amazon or Barnes & Noble and search for The Future You by Harry Glorikian.And now, back to the show.[musical interlude]Harry Glorikian: Now if we go one step before like getting that data, I mean. I have to imagine there's a huge political, bureaucratic or organizational challenge when it comes to who controls that data. And I think I have to assume, part of your job is convincing them to share it, right, despite its potential as intellectual property. Right. So how do you get on the phone and say, “Why don't you press send and shoot that over to me and so that we can take the next steps with it?”Charlene Son Rigby: Yeah, well, this is a really significant challenge, and I think that we're in a time of change in terms of attitudes around this. And part of it is what's been happening in terms of national programs to collect data. And people are starting to see the benefit of being able to share and really utilize these larger data sets. But the reality today is that in terms of the status quo, researchers control the data, and that's because the data was generated in a specific project that might have happened in academia or in industry. And there's a challenge with alignment of incentives. So on the academic side, I think that if one were to ask a researcher, do they want to hoard data, they don't want to hoard data. But the reality is, is that we still have this challenge with academic tenure and needing to publish or perish in that environment. And so researchers are still rightly concerned because of that paradigm that they have to write their paper and get their paper in before they can feel comfortable with allowing others to access the data. And so something really needs to happen there to that incentive system. Charlene Son Rigby: And in pharma, interestingly, I think that that's also an area where there has been a feeling that data is almost akin to intellectual property. But I think that especially in rare disease, there has been a growing understanding that accessing natural history data is not going to, at the end of the day, enable pharma to win because they're going to win on the quality of their therapeutic pipeline and how quickly they can get those therapies through to a successful market approval. And so what we've been really working to do is position natural history data as pre-competitive and for rare disease, frankly, it's too expensive to build these data sets, you know, alone. They're, as we scale to all of these disorders it's going to become untenable to for each company to build their own data set. The thing that we need to do and what Rare-X has been working to do with our collaborators is to transform the way that research has been done and initiated and break down these barriers and just show that the model of building these pre-competitive collaborations can work, both from a how does the business model work and then how is the data shared? And so I think that Rare-X being a nonprofit and a kind of neutral third party is really additive in terms of building those relationships so that this, this kind of public-private partnership model can really serve as a way to drive this type of change.Harry Glorikian: Now. Okay. So we've talked about industry sharing data, but I always I mean, especially in the last maybe 5 to 10 years, I keep thinking about, you know, how much of this comes directly or will come directly from patients, right? If they have control or access to their data, they have the ability, theoretically, the ability to then share that data. Right. And it could be just for the research in general as opposed to, not specifically to find a cure for a specific disease. So how do you get that data or convince patients to share it?Charlene Son Rigby: Yeah, well, I think that in in rare disease patients are typically highly motivated. You know, there are many rare diseases that can be pretty devastating in terms of the symptoms and the disease progression. And so overall, there is a a good portion of the rare disease population that is motivated to provide their data. And so what we do there and I think that that your points about the paradigms and thinking about it, that the patients are sharing their data, is really important. Because I think that that gets lost a lot. You know, a patient, and we've all signed up for some research study in our lives. You go and you fill out a survey or you contribute a blood sample or something, but oftentimes the patient contributions get forgotten because it becomes part of the researcher's data set. And so the what we're really trying to do is turn around that kind of paradigm with a core principle that patients are the ones who own their data and they're contributing their data. And so we enable them to, through an innovative consent process, we enable them to basically say that, yes, they're willing to share their data for these types of projects, and they can change that at any time. And we really feel that that changes the paradigm and allows them to have a real seat at the table. And then I wanted to also talk about, because obviously not everyone is — there is this proportion of folks who are motivated and trust and that's part of the reason that they will be willing to share their data — but there is also a portion of the population that might not be as motivated. And so it's important for us to be able to reach those populations and to build trust in the approach that we're taking and the value of it in terms of really being able to drive research. And so patient education is an important component of our model patient education, patient engagement. So we work directly with patient advocacy organizations and patient advocates to educate their communities on the value of data collection, how it really spurs and supports research. I think that that's a critical component to this as well.Harry Glorikian: Well, hopefully people will listen to this podcast worldwide and me that may spur someone to search you guys up on the web. But I noticed that another principle of the company is you don't sell patient data, right? Does that mean you're giving it away? And if that is true, what's the criteria of doing that? And do your data partners that you're giving it to have to meet certain standards?Charlene Son Rigby: Yeah, this is a great question because monetization models around data are very, very common today. Some companies have built significant valuations around data monetization. And for from a Rare-X standpoint, and this is part of the reason why we were started, is that the question was asked like, is that the right thing to do, especially for diseases where we're in the very early stages of understanding a disorder, and so I talked about this a little bit earlier, that if you have no data, getting any researcher interested is already then a huge challenge. And so we're here really to break down barriers to advancing rare disease research and encourage that research. And so I say sometimes that it's really important that we free the data. So we don't sell data at Rare-X. And we have an open access model for researchers to access the data. Charlene Son Rigby: And so there it is not, “we open the doors and anybody can come, come and access the data.” It's done in a responsible way. So one of the key things is that the data is de-identified. And so it is it is critical to do that, because we want the data to be utilized for research. It doesn't need to have identifiable information in it to drive that research forward. You know, the second thing is, is that researchers need to submit information on their project, and then that's reviewed by a data access committee. And the idea behind this data access committee is not to slow down things. It's a streamlined and efficient process. But the idea is that there is a review process. The researchers need to specify whether there's an IRB with whether that protocol has gone through an institutional review board review, and patients can opt to only have their data. As an example, patients can opt to only have their data shared with projects that have gone through IRB review. So there's really kind of a, since this is in many ways a two sided platform, there's really a way that patients can actively engage in terms of who's accessing their data. And then the researchers also in terms of the types of projects that they're that they're going to put forward.Harry Glorikian: Okay. So now you're giving away the data. Remember, I'm a venture capitalist, so you're giving away the data, right? First question somebody like me asks is, how do you pay for the operations? I mean, you're building this fairly sophisticated system that is, you know, you've got to clean the data, you've got to make it available. You're trying to talk to all these people. I mean, are you funded by let's say, I mean the typical stuff, grants? Is it member donations? Is it major gifts from individuals? You know, those are all the questions that that would cross my mind.Charlene Son Rigby: Yeah, absolutely. So frankly, it took me some time to get my arms around this, because my whole career has been in tech and venture backed companies. And so so I took some time to really think about this and think about this scalable model from a scalability standpoint before joining. So we get our funding largely through pharma and industry, as well as some grants. And the way that that funding happens is, it's basically platform investment. And I think that this is a really key thing from my perspective of, of thinking about the, the platform as something that is, if you will, a social good. Because they're investing in expanding the platform. They might invest, like Travere did, additionally to help to onboard specific groups or expand our capabilities in terms of being able to gather data in a particular disease area. But the funding that they're providing is to make the platform and the research program more robust. The data at the back end will be open in the way that we've we have talked about it. We have a unique ability to do that and create that kind of model as a nonprofit. And you're right that what we're doing, we're kind of blending this health tech company with this this nonprofit tmodel. But I think that there are some good examples out there of public private partnerships that have been very successful in the long term in doing this. And that's the model that we're really pursuing.Harry Glorikian: This area is small. I feel like I've been in and around it for a long time because of, you know, being in and around genomics. But there's a small but sort of growing infrastructure of support for rare disease, you know, patients in the world, sort of nonprofits, NGOs, patient advocacy group. Tthere's Global Genes, right? There's the Rare and Undiagnosed Network, RUN. There's the Undiagnosed Disease Network Foundation, and then there's the n-Lorem Foundation. And so many others that I don't want to leave out, right, the long list. But how does your, or, does your group overlap with these? I mean, I was reading a press release that this summer you guys will launch a collaboration with RUN and the Undiagnosed Disease Network Foundation to launch something called the Undiagnosed Data Collection Program. I mean, if you could sort of talk about what that project is about. Is your real ambition to be the data infrastructure sharing platform for the entire community of rare disease patients and families?Charlene Son Rigby: Yeah, well, I love that you call it infrastructure because I think this is critical from a concept standpoint. Rare disease should not be a model where each rare disease is doing it on its own. That was one thing that really struck me, thinking again about my daughter's disorder, where we were looking at ways to ladder up to that prospective natural history study. And we were trying to do something. I talked to a few other genetic neurodevelopmental conditions that were kind of our cohort, if you will, and we were all doing it in different ways. And it's such an opportunity cost to be figuring out the model new each time. And so these groups like Global Genes, amazing organization, actually, the Rare-X founder, Nicole Boyce, was also the founder of Global Genes. And we were, the STXBP1 Foundation used every single resource possible that came out of Global Genes. You know, that there's this broad this really broad education and enablement that needs to happen for people who want to become rare disease advocates. And that Global Genes has really done that in a tremendous way for so many organizations and so many individuals. And so we partner with them in terms of, and are very complementary, in terms of providing that infrastructure where Rare-X is focused on this area of how do you accelerate research through data collection, and then we use that.Charlene Son Rigby: It's great that you saw the announcement on the work that we're doing with RUN and the UDNF. I'm particularly excited about this because Rare-X, we talked earlier about ultra rare diseases, about n of 1 diseases. The reason why Rare-X is able to collect data across all of these disorders is that we have a fundamental assumption in the way that we collect data, which is that we don't assume that anybody does or does not have any symptoms. So we start out with a very high level, head to toe type of set of questions that if you say yes to any of them, it leads into a more detailed set of questions to collect data on particular symptoms. And so this is really ideally suited to situations where there isn't a lot of characterization around or understanding of the symptoms in a disorder and where you don't have a diagnosis. Because then what we're really enabling an individual to do is to gather robust data about their individual symptoms and disease progression that then can be utilized for research. And so we're very excited about being able to work with and support RUN and UDNF in in that effort. Charlene Son Rigby: And so do we have, you asked about ambition? You know, do we have a goal of being the only data sharing platform? I would say that our goal is to be an incredibly robust comprehensive cross- disorder platform. We believe that the way that we are approaching things really is enabling us to support all rare diseases. And we're really focused on de- burdening patients. So we're enabling patient communities to get started very quickly. And they don't have to become experts in protocol development, they don't have to become experts in creating clinical outcome assessments, etc. At the same time, the world is large and that they're going to be groups who decide that they need specific solutions. They may want to take on the role of being a principal investigator, as an example. And so I think that that's also the reason why federation is an important component of what we're really bringing forward as a as a way to bring all of that data together.Harry Glorikian: So again, you know, being on the venture side, right. You can lead a horse to water, but you can't make them drink, right? So you can do a lot. You can improve clinical trial readiness. You can make sure the data is better about rare disease patients, and that it's available. But you can't force the drug discovery companies or the drug makers to sort of develop a cure for a specific disease. Right. How do you think about that as part of a rare disease problem? Is that is that part of the work that Rare-X is,are you making it less risky so that they are willing to take that next leap?Charlene Son Rigby: You're right that pharma is going to be making, I would say, rational business decisions based on commercial drivers. And the challenge with a lot of rare diseases is that no one knows about that individual rare disease, and there isn't much data on it. And so anything that can be done to de-risk that process for a pharma company is huge in terms of increasing their interest or generating interest for them and then increasing their interest. And those things can include knowing that there's an activated community, you know, because if you have a clinical trial and nobody wants to participate in the clinical trial, that's going to be a huge problem in terms of being able to get that drug through an approval process. And so Rare-X, by building a very robust data set, is able to de-risk that process in terms of that investment, of trying to understand what the disorder is and also trying rto understand disease progression. And going back to that point about activation of the community, we're also able to help to demonstrate the activation of the community because of the number of people participating in the in the data collection.Harry Glorikian: I know it's not science fiction. I think it's right around the corner, hopefully, but I think, isn't an ideal future where we do either whole-exome or preferably whole genome on every newborn and scan for these genetic changes that are associated with rare diseases. I mean, I'm assuming that would really push this area much farther along. And if that is true, if that statement is true, how long do you think it'll take for us to get there?Charlene Son Rigby: Wow. You're reminding me of the Gattaca movie, but hopefully that's not the real future for us, you know. Winding things back. So my daughter was born, my daughter Juno was born in 2013. So that's nine years ago. And it took three years for us to get a diagnosis. And, you know, that's like an entire other podcast. But I think that the really, if we fast forward to 2022, we have groups like Stephen Kingsmore's group at Rady Children's where they're diagnosing newborns who are in the NICU, in less than 24 hours. And even standard exome testing, which it took us three months to get our results, the standard exome testing results are now returned in less than two weeks. You can also get it faster if you have an urgent testing and we have the tech. Illumina has long been dominant and continues to be dominant in the clinical area. But you have these new entrants with Oxford Nanopore, Element, Singular, and there are others that are entering now. And so these costs are coming down and this is really going to be a transformative in terms of becoming, I do think that this is going to become standard of care and it's closer than we think. I think that it's probably going to be in the next ten years, less than ten years.Charlene Son Rigby: We already have some analogs to this in terms of or precursors, I should say, in terms of newborn screening. And so what I think is going to happen is that genomic sequencing is is going to become a core newborn screening tool. And the interesting thing is that there are applications, not just in rare disease, but also in common conditions and the value of genomic sequencing. So today, 5% of rare diseases have a therapy, but there are right now hundreds of gene therapies that are currently in preclinical and clinical pipeline. So this picture is going to change enormously in the next five years. And so because the value of is going to grow, because there are therapies, the other important thing is therapeutic windows. So therapeutic windows are when we can intervene to have the most impact on a disorder. And so that's often when someone's young before the symptoms present or start or very early in that process. And so I think that this is going to become a reality in the next decade. And frankly, I think it's a very exciting time. I have always been a big believer that knowledge is power. And this is this is one of those great situations where we have the ability to do something because we know.Harry Glorikian: Yeah, I talk about some of this in my book and there's some, you know, interesting stories and it's a fascinating time. And when I think back, you know, to when we first started sequencing and people would say, why would you want to sequence anything? And now it's the complete opposite. And the price is coming down. It's becoming easier and faster. And I mean, at some point, I think the price is going to be low enough between the actual sequencing and then the analysis, that as my friend says, it's going to be a nothingburger. I mean, it's just going to be like, yeah, we should just do that because it gives us the information we need for the next step, which is sort of going to be interesting.Charlene Son Rigby: Yeah, absolutely. I think that the that is the challenges that I talked about, cost of sequencing. But you're right that, you know, the analysis is still quite expensive today. And that's something that we're also going to need to need to improve. I mean, AI and the growing knowledge bases is really going to help to address that. Yeah. And but that's a huge component of it as well today. Absolutely.Harry Glorikian: Yeah. I'm looking at a company that in this particular area of oncology, they've gotten the whole genome analytics down to about $60. So it's, you know, it's coming to a point where you're like, why wouldn't you do that? Like, what's stopping you from doing that? So it's been great having you. Great conversation. I wish you guys incredible success. A nd I'd love to keep up on how things are going with the organization.Charlene Son Rigby: That'd be great, Harry. Really enjoyed it today. Thanks.Harry Glorikian: Thank you.Harry Glorikian: That's it for this week's episode. You can find a full transcript of this episode as well as the full archive of episodes of The Harry Glorikian Show and MoneyBall Medicine at our website. Just go to glorikian.com and click on the tab Podcasts.I'd like to thank our listeners for boosting The Harry Glorikian Show into the top three percent of global podcasts.If you want to be sure to get every new episode of the show automatically, be sure to open Apple Podcasts or your favorite podcast player and hit follow or subscribe.Don't forget to leave us a rating and review on Apple Podcasts. And we always love to hear from listeners on Twitter, where you can find me at hglorikian.Thanks for listening, stay healthy, and be sure to tune in two weeks from now for our next interview.
In this week's episode, I am joined by Dr. Susan Landers, author, speaker & retired neonatologist. Susan enjoys discussing physician burnout, how she got there, and ways to treat & recover from it. Susan is a retired neonatologist who worked full-time in the NICU for thirty-four years and raised three children to young adulthood. She served on the faculty of two medical schools, and served in private practice for over twenty years. She achieved many academic and professional accomplishments, and she also encountered challenges along the way, both in her career and in her mothering. There was one particularly difficult event during her midlife, after the birth of her third child, that she had to endure. However, it propelled her to make choices and career changes. She loves to tell stories that reassure younger mothers to know that they, too, can be a “good enough mother” especially if they work full-time. She supports mothers with her social media posts and her blog. She also cautions physicians and nurses - who might be experiencing serious burnout – about the ways in which it affects their lives and their relationships, and the many ways to treat and recover from burnout. Her new book is “So Many Babies: My Life Balancing a Busy Medical Career and Motherhood.” We discuss Susan's own personal journey of experiencing burnout, how she came to recognize it, and how she recovered from it. This experience led her to find her own voice and now works to empower the voices of other physicians on the front lines to find their fulfillment. Tune in to this week's episode to learn: How she actually changed her practice to become more family-friendly & flexible The moment Susan noticed her symptoms of burnout & knew something was wrong How we can change the gender dynamic in healthcare practice What she did to recover from burnout over a two-year period The importance of setting non-negotiables and implementing self-care practices Grab your drink of choice and join the conversation! Resources Connect with Susan Website: https://susanlandersmd.com Facebook: https://www.facebook.com/drsusanlanders Instagram: https://www.instagram.com/drsusanlanders/ LinkedIn: https://www.linkedin.com/in/susan-landersmd/ Twitter: https://twitter.com/susanlandersmd Pinterest: https://www.pinterest.com/susanlandersberry/ Good Reads: https://www.goodreads.com/user/show/45507615-susan-landers Connect with Jennifer George: @bestobsessed_with_jenn | Instagram Jennifer George | Website @jenngeorge08) | Twitter Jennifer George | Facebook Click here to check out my book about connecting and communicating with patients to empower their experiences! Stay up to date on everything happening with the Healthcare Provider Happy Hour by subscribing to my weekly newsletter at www.jennifergeorge.co
Bio: Alvaro is a pediatric resident at Tulane University and an incoming neonatology fellow at Children's Hospital of Philadelphia. He is from Lima, Peru where he learned medicine in a resource-limited setting. He created two bots that keep the #neoTwitter community connected and informed. These bots are @neo_papers and @neo_twiter. The former pulls published papers from PubMed and tweets them, and the latter retweets posts related to the #neoTwitter community.Find out more about Alvaro and this episode at: www.the-incubator.org/068-dr-alvaro-proano-md______________________________________________________________________________________As always, feel free to send us questions, comments or suggestions to our email: email@example.com. You can also contact the show through instagram or twitter, @nicupodcast. Or contact Ben and Daphna directly via their twitter profiles: @drnicu and @doctordaphnamdenjoy!This podcast is proudly sponsored by Chiesi.
Theresa Bowden is a rockstar flight nurse who specializes in NICU transports. In this episode, you will listen in as Theresa explains anything and everything you have ever wondered about NICU interfacility transports. Topics include: Who gets prostaglandin? IO or IV catheter for UVC Cardiac vs. Respiratory Initial Vent Settings Get credit for this class by listening to it in FOAMfrat Studio.
For many parents, the NICU is an initiation into the medically complex world. Medical terminology is thrown around with assumed understanding, and tubes and cords protrude their precious infant. Beyond that, the emotional rollercoaster endured pushes many parents past their limits—and yet here we are. In this solo episode, I share a bit about what Kimball's NICU experience was for us, with memories that are relatable for my fellow parents of NICU babes, and eye-opening for the less experienced. This is a rebroadcast of Ep. 26 of Season 2. Links: Listen to Anna's story episode, that released immediately after this one. Listen to the Preface Episode here: https://therarelifepodcast.com/show-notes/preface Ep. 13: Feeding Tube Adventures: https://therarelifepodcast.com/show-notes/ep-13-feeding-tube-adventures Ep. 5: A List of Diagnoses: https://therarelifepodcast.com/show-notes/ep-5-list-diagnoses-solo-episode Donate to Ronald McDonald House Charities here: https://secure2.convio.net/rmhci/site/SPageNavigator/pw/Donation_Landing.html Follow me on Instagram. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Check out our appointment day merch. Check out our sponsor BetterHelp for online licensed therapy.
Join the Cribsiders and our double-board certified guest, Dr. Jonathan Levin, as we discuss Bronchopulmonary Dysplasia (BPD). We learn about everything from epidemiology and pathophysiology to diagnosis and treatment of this common respiratory illness. If you've ever been lost in the NICU wondering whether your patient has “chronic lung disease,” “evolving BPD,” or “BPD,” wonder no-more!
On this episode of the podcast, you will hear an amazing story of resilience and hope.This episode originally aired back in August of 2020. This is the most shared of all of our podcast episodes; you will quickly learn why after listening to this inspiring story. Meet Maura Senneff, mom to sweet Ryan. Ryan is a thriving 8-year-old boy who has Down syndrome. The amazing advocate by his side, his momma Maura, describes that “zooming out” and looking at things from a wide lens helped them turn Ryan's health around.She talks about small changes and the "no limits" attitude their family lives by. [1:39] Maura shares about her family and introduces us to Ryan and his journey with Down syndrome [2:40] Maura explains how resilient Ryan is despite his struggles with chronic illness for his first six years of life [3:27] Never giving up was key to their success at navigating Ryan's diagnosis of Down syndrome [4:00] Maura shares how Ryan's diagnosis with Down syndrome was not going define him and put limits on what he can and can't do [4:56] Maura shares the deep meaning behind advocating for Ryan; it meant the idea of unlocking potential and removing barriers for generations to come [5:23] Maura explains how they came to learn of Ryan's unexpected Down syndrome diagnosis at birth [7:12] Maura shares that during her prenatal care there were no markers on any of her ultrasounds for Down syndrome [8:04] Maura began to have what she thinks are braxton hicks contractions but learns she is in labor [9:07] Maura describes Ryan's quick delivery and the time that lapsed before getting to see him [9:32] She describes how Ryan wasn't latching and crying like her first baby and something felt wrong [10:45] Maura describes the moment she told her husband Jack that she thought Ryan may have Down syndrome [10:56] She explains through tears how she feels sad about the emotional roller coaster of emotions she went through the first few days and how there is immense joy despite the diagnosis [12:51] Ryan goes to the NICU for additional testing and Maura describes how she was mentally preparing for the diagnosis of Down syndrome [13:45] Maura shares how her husband saw their family pediatrician come in with his Saturday work clothes on and was how it was an indicator that something serious was happening [14:07] Maura explains the emotional moment they heard the official diagnosis of Down syndrome [15:30] Maura explains how with Down syndrome, there is a variety of health complications and Ryan was fairly healthy despite the circumstances, but struggled with acute illness [18:26] Maura shares how she and her husband didn't know much about Down syndrome and special needs before meeting their son [19:57] Ryan was reading before he learned to talk. Maura did not know if he was going to talk but ensured that he had access to as much therapy as possible [22:37] Maura shares how she advocated for Ryan during one of his ICU stays [24:02] Ryan had a low white blood count at birth and had several emergent blood draws over the years and Maura shares her desperation for answers [26:09] Maura explains how an ABA therapist was a pivotal force for Ryan to potty train [28:00] Ryan did swimming lessons at 18 months old, could roll over and do things in the water before he could do them without his walker [29:46] Maura shares how other people have reached out to her after finding her on instagram and how his story has given them hope [31:00] Maura shares about the language surrounding Down syndrome and how it made her feel [33:50] When children have a diagnosis, it is important to not put what they can or can't do in a box [35:40] Maura explains how the school called her about Ryan's therapy, stating that he did not need it any longer. She had his therapists train the teachers on his behavior plan [37:25] She shares the one thing she wished she would have done in early Ryan's diagnosis is to meditate and how many medical professionals urged her to do so as it is a part of their daily practice. It helped her not get overwhelmed in her thought life [41:00] How their family added meditation into their daily routine for calm minds,manage stress and think clearly [43:05] Maura explains how going through the emotions and feeling like your head is spinning is normal but you don't need to stay there. Meditation is so crucial to her to get through the days. [48:00] Maura explains how ABA therapy was a game changer and how she wishes that she would have started Ryan in this type of therapy at birth [50:00] She shares about how when she broke her foot badly and told the doctor she would do anything to help her broken foot.. He sent her to a Chinese medicine doctor for acupuncture and had immediate pain relief. She vented to the doctor about Ryan's situation and she suggested she bring him in for treatment [54:00] Maura explains how thinking outside of the box and trying things that are not typical are SO impactful to their experience. Find your tribe that will sit in the trenches with you. [55:50] Within 2 weeks of using functional medicine, Ryan was able to have regular bowel movements and his far-sighted vision changed by a third then even more in the weeks to come. Ryan's labs were all in normal range within a few weeks. [01:00:00] Maura shares how Ryan's thyroid level changed drastically after acupuncture [01:03:42] She shares how Ryan has shown them that ANYTHING is possible and how much he has taught them about achievement [01:06:45] How Maura honed in on working on gross motor skills for Ryan as she knew it would help change many things for him. They improved drastically after 5 or 6 treatments [01:07:43] Maura had Ryan participate in a study that focuses on brain function in children with Down syndrome and the doctor doing the study could not tell that Ryan had Down Syndrome by looking at the MRI. CONNECT WITH MAURA: Instagram 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. Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.
Today's conversation is with my beautiful friend Kaitlyn Foster of @wildmotherpath. Kaitlyn shares with us her journey of working as a NICU nurse very much IN the system, turned Radical Birth Keeper now fully serving women OUTside of the system -- and her powerful hands-off homebirth story with her son Luca. We also unpack the spiritual/energetic layers of pregnancy & birth, why birth MATTERS, what it means to trust your body & her inherent process, being empowered in your choices throughout YOUR pregnancy & birth, why having "evidence-based research" doesn't really mean much when it comes to backing your choices, being afraid & untangling your former identity, the death of the maiden and the emergence of the mother that this journey WILL initiate you into, and sooo much more. For further support on this topic and beyond, you can reach out to Kaitlyn via her Instagram @wildmotherpath // or learn more on her website to discuss her virtual pregnancy & birth prep support AND her in-person birth work [in the Charlotte, North Carolina area]. AND of course - you can visit my website to explore & enroll in my private mentorship
Peter Dankelson was born at 30 weeks and diagnosed with Goldenhar Syndrome. His Mom, Dede, kept a daily journal to update family and friends. This became known as "Pete's Diary" during the 102 days he was in the NICU. Fast forward to now, Pete has underwent 37 surgeries, him and Dede have inspired thousands through motivational speaking and now he is pursuing his passion for guitar. These two are very inspiring and super cool people to talk with. I think you are really going to enjoy this episode. Check out all the info at Petesdiary.com The Tone Mob Discord is HERE TEXT ME (503) 751-8577 Support the show and get extra episodes over at Patreon.com/tonemob. You can also help out with your gear buying habits by purchasing stuff from Tonemob.com/reverb Tonemob.com/sweetwater or grabbing your guitar/bass strings from Tonemob.com/stringjoy Release your music via DistroKid and save 7% by going to Tonemob.com/distrokid Learn more about your ad choices. Visit megaphone.fm/adchoices
Sponsored by: Brooklyn Candle - use code Motherhood20 to save Kindred Bravely - use code Unstressed20 to save Motherhood Unstressed CBD - use code Podcast to save In her new book, Hope In The Heartache, Kelly Speck shares how she navigates the challenges of being the matriarch of a five-person family, while also caring for her special needs child who requires round-the-clock care. In this episode learn how how one family not only survived, but thrived, driven by determination and the never-wavering power of faith. About Hope In The Heartache “He was born blue; he was barely alive. All the air had been sucked from the room.” Kelly Speck had planned for her newborn son, Bennett, to be placed on her bare chest for his first attempt at breastfeeding. Instead, he was whisked away to the NICU. It was, as Speck writes, “the kickoff of a nightmare journey.” The doctors said the end was near for Bennett. Was there any hope? Hope in the Heartache, Kelly Speck's true-to-life and immaculately detailed memoir, tells of Bennett's fight to survive and his family's journey through grief and exhaustion in hospitals, churches, and insurance offices. The Specks never lost faith, and in their devotion to God and family, they learned what matters most: hope. Connect with Kelly on Instagram @speckhome Web: https://hopeintheheartache.com Jill's House Read Hope in the Heartache Like the show? Please leave a review here - even one sentence helps! Post a screenshot of you listening & tag me on Instagram so I can thank you personally! Get the book Motherhood Unstressed - Daily Meditations on Motherhood, Self-Care, and the Art of Living a Life You Love available on Amazon and Kindle Subscribe to The Motherhood Unstressed Podcast Instagram @motherhoodunstressed