Podcasts about Hypoplastic left heart syndrome

This week, it's an honor to welcome a dear friend, Brook Outland Bryant. Brook works with Safe Families, an organization that seeks to keep kids safe and families together. We dive into her journey of blending a family through marriage, adopting two boys internationally and a son domestically, and, most poignantly, the birth and loss of her daughter Blakely. Born with Hypoplastic Left Heart Syndrome, Blakely spent almost a year in the hospital before she went home to be with the Lord. Brook's story is one of resilience and hope despite heartbreaking loss. Get 45% OFF Magic Mind https://www.magicmind.com/whatelsejan DISCOUNT CODE: WHATELSEJAN SWE Episode about Mississippi  Safe Families Brooke's Facebook Follow Brookey on Insta → @brookeoutland  Follow SWE on Insta → @so.what.else  Follow Kaitlin on Insta → @kaitlingraceelliott  SWE Website

This week, it's an honor to welcome a dear friend, Brook Outland Bryant. Brook works with Safe Families, an organization that seeks to keep kids safe and families together. We dive into her journey of blending a family through marriage, adopting two boys internationally and a son domestically, and, most poignantly, the birth and loss of her daughter Blakely. Born with Hypoplastic Left Heart Syndrome, Blakely spent almost a year in the hospital before she went home to be with the Lord. Brook's story is one of resilience and hope despite heartbreaking loss. Get 45% OFF Magic Mind https://www.magicmind.com/whatelsejan DISCOUNT CODE: WHATELSEJAN SWE Episode about Mississippi  Safe Families Brooke's Facebook Follow Brookey on Insta → @brookeoutland  Follow SWE on Insta → @so.what.else  Follow Kaitlin on Insta → @kaitlingraceelliott  SWE Website

Colleen Melchiorre is a dynamic strategic leadership executive and a devoted mother. In this compelling episode, Colleen shares an extraordinary story of courage and resilience as she advocates for her son, Paul, diagnosed prenatally with Hypoplastic Left Heart Syndrome. Fueled by her unwavering maternal instincts, Colleen embraced the role of "Medical Mom," fearlessly navigating the intricate and often overwhelming medical system. With a perfect blend of wit, wisdom, and practical insight, she recounts her journey, offering invaluable advice on managing complex medical information, building effective relationships with care teams, and creating a sense of home even within the hospital walls. Colleen's tenacity and compassion make her the ultimate advocate—exactly the ally anyone would want in their corner. Her candid reflections also serve as a powerful lesson for the healthcare industry, providing critical insights into how to engage meaningfully with patients and families. This episode is a masterclass in advocacy, resilience, and the profound strength of a mother's love About Colleen: Colleen Coffey Melchiorre, Ed.D. is a seasoned executive consultant, speaker, and strategist with over 23 years of experience specializing in organizational development and team dynamics. Her expertise spans corporate, non-profit, and higher education sectors, where she has consistently driven business growth and improved team performance for organizations ranging from small non-profits to Fortune 500 companies. A published researcher and thought leader, Dr. Melchiorre holds degrees from Belmont University (B.S.W.), Eastern Illinois University (M.S.), and Trevecca Nazarene University (Ed.D.). She advocates for organ donation, neurodiversity, and emotional wellness, serving as a parent partner at a leading children's hospital. Beyond her professional work, she is an adaptive cheer coach, certified Pilates and barre instructor, and dedicated yogi. Active in her church community, Dr. Melchiorre resides near Nashville, TN with her family. From the boardroom to the sidelines, to the mat-her authentic, holistic approach inspires teams, athletes, and organizations alike.

aka AP Sh*ts on Megan's JokesThis week we are discussing The Dead Files “The Watcher” (Season 11 Episode 3) which aired July 25, 2019. But of course, that's not all. We go off on quite a long tangent about the lesser known but well-loved soap opera “Passions”, and AP gives us a few Science Lessons such as Cyclones vs Tornados and Hay Vs. Straw.So, mix up yourself a Martimmy, and join us where… The Activity Continues.PS: Yes Amy and AP do know that the Haggis is not actually an animal. But does Megan?Content Warning:In this episode we mention some bunny casualties, stroke, tornados/cyclones, homicide, and suicide so trigger warning for those who need it. Also, while Amy and Steve's swears are bleeped on TV, ours are not.We get a little scientific in this one, and even more so than usual, come up with possible explanations for some of the things that the family experiences. But this by no means indicates that we do not believe the family or are invalidating their experiences. We believe.The Activity Continues is a paranormal podcast where soul friends, Amy, Megan, and AP chat about pets, true crime, ghost stories, haunts, dreams, and other paranormal stuff including the TV show, The Dead Files. We also sometimes interview interesting people, whether it be a paranormal professional, a Dead Files client, or a listener with spooky stories.This episode was recorded on November 3, 2024, and released on December 5, 2024.Chapter Markers00:00:00 Intro00:39:24 Hello!00:01:48 Content Warning00:04:39 Overview00:06:26 Segment One00:42:24 Segment Two00:46:26 Passions Discussion00:51:53 Resume Segment Two01:08:04 Segment Three01:23:51 Thank you and Goodbye01:24:26 OutroEpisode links:The Dead Files Official Podcast: https://pod.link/1642377102Matt Anderson Stand-Up: https://www.facebook.com/matthew.anderson.7140/Matt on YT: https://www.youtube.com/watch?v=VPPDpZsH-Q8Signs and symptoms of a stroke: https://www.cdc.gov/stroke/signs-symptoms/index.htmlPassions Podcast: https://www.passionspodcast.com/Cyclones Vs. Tornados: https://www.aims.gov.au/docs/projectnet/cyclones.htmlStraw vs. Hay: https://homesteadgardens.com/whats-the-difference-between-hay-and-straw/Hypoplastic Left Heart Syndrome: https://www.mayoclinic.org/diseases-conditions/hypoplastic-left-heart-syndrome/symptoms-causes/syc-20350599Disclaimer:This podcast is in no way affiliated with Warner Brothers, HBOMax, the Travel Channel, Painless TV, or the TV show The Dead Files or any of its cast or crew. We're just fans that love the show and want to build a community of like-minded people who would enjoy hanging out and discussing the episodes and similar content.Credits:Hosted by: Amy Lotsberg, Megan Simmons, and Amy PiersakProduction, Artwork, and Editing: Amy Lotsberg at Collected Sounds Media, LLC.Theme song. “Ghost Story” and segment music by Cannelle https://melissaoliveri.comAI artwork by Fotor https://www.fotor.com/referrer/1ygaknya Socials and other goodies:Our website, https://www.theactivitycontinues.com/ Facebook Page: https://www.facebook.com/theactivitycontinues Instagram: https://www.instagram.com/theactivitycontinues/ Reddit: https://new.reddit.com/r/TheActivityContinues/Twitter: https://twitter.com/TheActivityCont   Blog for extras: https://www.theactivitycontinues.com/blog/Patreon: https://www.patreon.com/theactivitycontinuesYouTube: https://bit.ly/TAC_videos Spotify: https://bit.ly/TACspotifyNewsletter sign-up: http://eepurl.com/hWnBLL SEND US YOUR PARANORMAL STORIES!Email: theactivitycontinues@gmail.com and maybe it will be read on the show!Or visit our website, https://www.theactivitycontinues.com/ and click on the microphone icon to leave a message and maybe it will be played on the show!BE OUR GUEST!Are you a The Dead Files client, or a paranormal/spiritual professional, and are interested in being interviewed on our show? Let us know by filling out our guest form:https://www.theactivitycontinues.com/guests/intake/Affiliates/SponsorsIf you want to support us, see our Store page for all the links for all our current affiliates. https://www.theactivitycontinues.com/store/ Thank you for listening, take care of yourselves. We'll see you next week!Become a Patron, join our Ghosty Fam! https://www.patreon.com/theactivitycontinuesJoin our Ghosty Fam over on Patron, https://www.patreon.com/theactivitycontinues/Support this podcast at — https://redcircle.com/tac/exclusive-content

Imagine at your first doctors appointment being told your baby had fluid around their heart? After being advised to wait until the baby had grown to conduct a full anatomy screening, today's guest was faced with devastating news. Taysha Turman found out at 16 weeks that her baby was diagnosed with hypo-plastic left heart syndrome and a diaphragmatic hernia. The doctors advised her to terminate her pregnancy, but she kept her faith in God and trusted God throughout her pregnancy and birth. Her baby boy had a traumatic birth receiving chest compressions and died 3 months later due to his heart condition. This episode is for you to listen to if you have experienced child loss and how to find peace after loss. Become a Sisters in Loss Birth Bereavement, and Postpartum Doula Here Living Water Doula Services Book Recommendations and Links Below You can shop my Amazon Store for the Book Recommendations You can follow Sisters in Loss on Social Join our Healing Collective Online Support Group Join the Sisters in Loss Online Community Sisters in Loss TV Youtube Channel Sisters in Loss Instagram Sisters in Loss Facebook Sisters in Loss Twitter You can follow Erica on Social Erica's Website Erica's Instagram Erica's Facebook Erica's Twitter  

Quick out of the shoot! Meet Aislinn! Motherhood began in the NICU where Aislinn found her inner mama bear, advocating for her baby, and learning to stand powerful in motherhood. After spending 60 days in the NICU, Aislinn and her husband took their sweet angel home and quickly became pregnant with their son. Believing that the worst was behind them they quickly discovered that their unborn baby had Hypoplastic Left Heart Syndrome. With an unpredictable future, the undeniable reality of having a medically fragile infant, the looming questions of ‘why me,' Aislinn finds her strength in her spirituality. Listen now to this incredibly strong mama bear! 

We're sharing this guest episode again because it is full of such innovative and exciting medical advances that more of us should be aware of. If you didn't catch this one the first time, here is your chance. Dr. Timothy Nelson is the founder of HeartWorks, an organization that developed from the Todd & Karen Wanek Family Program for Hypoplastic Left Heart Syndrome founded at the Mayo Clinic in 2010. Tim's work specializes in the creation of stem cells to create heart muscle and hopefully cure pediatric congenital heart defects in the near future.The HeartWorks team has developed a platform that enables multiple cell-based clinical trials to be conducted simultaneously in collaboration with a consortium of world-class medical institutions. Check out this short video that chronicles the transformative technology of bioengineered cardiac tissue by converting a piece of skin from an individual to a beating heart muscle.Dr. Nelson earned his MD and his Doctor of Philosophy from the Medical College of Wisconsin, and he's been a physician at the Mayo Clinic in Rochester, MN since 2005In this episode, Dr. Nelson dives into the incredibly exciting technology that he and his team at HeartWorks are working on in an effort to create positive outcomes for those born with congenital heart defects. Statistics show that 1 in 100 children are born with a congenital heart defect and 1 in 4 of those born with a CHD will require a life-saving surgical procedure within their first year of life. Even with these interventions, 50% of children born with CHD won't make it to their fifth birthday. HeartWorks is working tirelessly to give children and adults with CHD a promising and fulfilling future.Dr. Nelson explains what exactly stem cells are, and how they are being used to have the potential to rebuild the heart. This is a fascinating episode, and I know you won't want to miss it.Quote from the episode:“We are on the tip of an iceberg and when we show this model can work, it is catalytic” - Dr. Tim NelsonTo learn more about Dr. Tim Nelson, please see the links below:Website: heartworksinc.orgCase2Cure Podcast: https://podcasts.apple.com/us/podcast/cause2cure/id1489215831LinkedIn:  https://www.linkedin.com/in/tim-nelson-cause2cure/Facebook (personal): https://www.facebook.com/profile.php?id=100010438424147To Connect with Mike:Website: https://mikemalatesta.com/LinkedIn: https://www.linkedin.com/in/mikemalatesta/Get Mike's book “Owner Shift”: https://mikemalatesta.com/owner-shift-book-by-mike-malatesta/Please LIKE

We're sharing this guest episode again because it is full of such innovative and exciting medical advances that more of us should be aware of. If you didn't catch this one the first time, here is your chance. Dr. Timothy Nelson is the founder of HeartWorks, an organization that developed from the Todd & Karen Wanek Family Program for Hypoplastic Left Heart Syndrome founded at the Mayo Clinic in 2010. Tim's work specializes in the creation of stem cells to create heart muscle and hopefully cure pediatric congenital heart defects in the near future.The HeartWorks team has developed a platform that enables multiple cell-based clinical trials to be conducted simultaneously in collaboration with a consortium of world-class medical institutions. Check out this short video that chronicles the transformative technology of bioengineered cardiac tissue by converting a piece of skin from an individual to a beating heart muscle.Dr. Nelson earned his MD and his Doctor of Philosophy from the Medical College of Wisconsin, and he's been a physician at the Mayo Clinic in Rochester, MN since 2005In this episode, Dr. Nelson dives into the incredibly exciting technology that he and his team at HeartWorks are working on in an effort to create positive outcomes for those born with congenital heart defects. Statistics show that 1 in 100 children are born with a congenital heart defect and 1 in 4 of those born with a CHD will require a life-saving surgical procedure within their first year of life. Even with these interventions, 50% of children born with CHD won't make it to their fifth birthday. HeartWorks is working tirelessly to give children and adults with CHD a promising and fulfilling future.Dr. Nelson explains what exactly stem cells are, and how they are being used to have the potential to rebuild the heart. This is a fascinating episode, and I know you won't want to miss it.Quote from the episode:“We are on the tip of an iceberg and when we show this model can work, it is catalytic” - Dr. Tim NelsonTo learn more about Dr. Tim Nelson, please see the links below:Website: heartworksinc.orgCase2Cure Podcast: https://podcasts.apple.com/us/podcast/cause2cure/id1489215831LinkedIn:  https://www.linkedin.com/in/tim-nelson-cause2cure/Facebook (personal): https://www.facebook.com/profile.php?id=100010438424147To Connect with Mike:Website: https://mikemalatesta.com/LinkedIn: https://www.linkedin.com/in/mikemalatesta/Get Mike's book “Owner Shift”: https://mikemalatesta.com/owner-shift-book-by-mike-malatesta/Please LIKE

In this episode, Jennifer Schilling shares her experience as a caregiver to her son Connor. From his childhood struggles with Hypoplastic Left Heart Syndrome to a life-changing heart transplant on New Year's Day, their journey is one of resilience and hope. Download the app - My Med Schedule Plus to help track your medications Android: https://play.google.com/store/apps/details?id=com.medactionplan.mymedscheduleplus&pcampaignid=web_share Apple: https://apps.apple.com/us/developer/medactionplan-com/id397469807 Children's Organ Transplant Association (COTA) https://cota.org/  

In this episode of Stories from the River, host Charlie Malouf welcomes guest Dr. Timothy Nelson ("Tim") for part one of their three-part series. Charlie and Tim talk about the inspiring journey of establishing HeartWorks, a non-profit organization aiming to revolutionize the treatment of and cure congenital heart disease (CHD). Dr. Timothy Nelson, the Founder and CEO of HeartWorks, details the collaborative network created with eleven pediatric hospitals to combat the rarity and complexity of CHD. This network operates on a groundbreaking hybrid model that mixes non-profit philanthropy with for-profit commercial ventures for financial sustainability.  With a focus on a "Team of Teams" approach encompassing basic researchers, manufacturing, clinical trials, and marketing teams, HeartWorks embraces internal tension as a catalyst for innovative solutions. Tim stresses the importance of keeping the true purpose — curing CHD and enriching the lives of affected children and adults — at the heart of the organization's mission and vision. The conversation further explores Tim's personal connection to the cause, rooted in his upbringing in Wisconsin, and a transformative experience following a successful heart surgery that led him to a career in stem cell research and cardiology.  After securing a National Institutes of Health (NIH) grant for this groundbreaking technology that converts a patient's skin cells into functioning heart tissue, Tim envisions broad applications, including treating patients with congenital heart defects.  This ultimately led to discussions with the Wanek family and the Mayo Clinic. Dr. Nelson also highlights the Wanek family's role as major benefactors of the hypoplastic left heart syndrome program at Mayo Clinic through the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome. Tim discusses the purpose behind the creation of ReGen Theranostics, a for-profit company started in 2010 aimed at commercializing and manufacturing this game-changing technology.  With ReGen becoming the world's largest stem cell repository and laying the foundation for HeartWorks, Tim's story and the HeartWorks story is a testament to the power of vision, collaboration, and persistent dedication.   Tim shares his personal background including his early influence and mentorship from his grandfather Noble Kleven, the former sheriff of Trempeauleau County.  And he discusses the benefits of working closely with his best friend and older brother Matt Nelson, who serves as the President and oversees operations for HeartWorks and ReGen Theranostics.  Come back for the second part of this conversation on Tuesday! Additional Resources:  HeartWorks - www.webuildhearts.org   ReGen Theranostics, Inc. - https://regentheranostics.com   Shinya Yamanaka - https://www.ucsf.edu/news/2012/10/104393/shinya-yamanaka-wins-2012-nobel-prize-medicine     This episode on YouTube: https://youtu.be/vIJAImWjRRw  Visit https://www.storiesfromtheriver.com for more episodes.  

In this episode of Stories from the River, host Charlie Malouf welcomes guest Dr. Timothy Nelson ("Tim") for part one of their three-part series. Charlie and Tim talk about the inspiring journey of establishing HeartWorks, a non-profit organization aiming to revolutionize the treatment of and cure congenital heart disease (CHD). Dr. Timothy Nelson, the Founder and CEO of HeartWorks, details the collaborative network created with eleven pediatric hospitals to combat the rarity and complexity of CHD. This network operates on a groundbreaking hybrid model that mixes non-profit philanthropy with for-profit commercial ventures for financial sustainability.  With a focus on a "Team of Teams" approach encompassing basic researchers, manufacturing, clinical trials, and marketing teams, HeartWorks embraces internal tension as a catalyst for innovative solutions. Tim stresses the importance of keeping the true purpose — curing CHD and enriching the lives of affected children and adults — at the heart of the organization's mission and vision. The conversation further explores Tim's personal connection to the cause, rooted in his upbringing in Wisconsin, and a transformative experience following a successful heart surgery that led him to a career in stem cell research and cardiology.  After securing a National Institutes of Health (NIH) grant for this groundbreaking technology that converts a patient's skin cells into functioning heart tissue, Tim envisions broad applications, including treating patients with congenital heart defects.  This ultimately led to discussions with the Wanek family and the Mayo Clinic. Dr. Nelson also highlights the Wanek family's role as major benefactors of the hypoplastic left heart syndrome program at Mayo Clinic through the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome. Tim discusses the purpose behind the creation of ReGen Theranostics, a for-profit company started in 2010 aimed at commercializing and manufacturing this game-changing technology.  With ReGen becoming the world's largest stem cell repository and laying the foundation for HeartWorks, Tim's story and the HeartWorks story is a testament to the power of vision, collaboration, and persistent dedication.   Tim shares his personal background including his early influence and mentorship from his grandfather Noble Kleven, the former sheriff of Trempeauleau County.  And he discusses the benefits of working closely with his best friend and older brother Matt Nelson, who serves as the President and oversees operations for HeartWorks and ReGen Theranostics.  Come back for the second part of this conversation on Tuesday! Additional Resources:  HeartWorks - www.webuildhearts.org   ReGen Theranostics, Inc. - https://regentheranostics.com   Shinya Yamanaka - https://www.ucsf.edu/news/2012/10/104393/shinya-yamanaka-wins-2012-nobel-prize-medicine     This episode on YouTube: https://youtu.be/vIJAImWjRRw  Visit https://www.storiesfromtheriver.com for more episodes.  

Commentary by Dr. Candice Silversides

Jayden King is an extraordinary 4th grader from Coppell, TX. Born on February 21, 2013, in Dallas, Jayden is not your average kid. Despite facing challenges from being born with Hypoplastic Left Heart Syndrome, a rare heart condition, he exudes boundless positivity and curiosity about the world around him. A passionate sports enthusiast, particularly for football, Jayden is the quarterback of his flag football team during the season and loves shooting hoops with his brothers. His love for the Dallas Cowboys is unmatched, and his knowledge of football and basketball stats rivals that of seasoned fans. Remarkably, Jayden's resilience shines through his three open-heart surgeries, leaving him with visible scars he proudly calls his "zipper." Despite these challenges, Jayden lives life to the fullest, embracing each day with courage and determination. This feature is published in 'The Time Edition' of AwareNow Magazine: https://www.awarenowmagazine.com Featuring: Jayden King Interviewed by: Allié McGuire Music by: Ian Post Produced by: AwareNow Media --- Support this podcast: https://podcasters.spotify.com/pod/show/awarenow/support

Katie and Cortney Given, host of the Mindset for Medical Moms Podcast, interview Leah Ward about her son Jackson and his journey with Hypoplastic Left Heart Syndrome (HLHS.) Leah shares the ups and downs of being a heart mom.  Jackson received the gift of life through a Heart Transplant after he went into heart failure and was placed on the Berlin Heart for several months. Leah and Cortney's conversation (Cortney is a heart Mom too!) with Katie will leave you feeling inspired to live in each moment. You will not want to miss this episode of the podcast. [6:50] Introductions [8:40] 20 week ultrasound and subsequent echocardiograms [9:57] The unimaginable grief of losing her older son months ago [11:29] First surgery at 4 days old [12:05] After Fontan surgery, Jackson developed a lung condition [12:50] Rhinovirus caused Jackson to go into heart failure [13:32] Jackson was put on a Berlin heart [14:00] 15 month hospital stay [15:14] Explaining to Jackson about his heart transplant [16:00] Jackson's will to fight [17:45] A sequence to to build up to the question [19:00] Accepting reality that all life will end [20:27] Advances in the medical field with the best quality of life [22:11] How Leah supported Mae [24:35] Grappling with the concept of finality [27:14] Staying in the present [29:35] It's ok to grieve the dreams you had for your children [31:28] Letting yourself feel the feelings [35:15] Taking things day by day [36:31] Someone has lived through my worst fear [38:30] You have be stronger than the diagnosis [40:15] Advocate for your child [43:00] Not having an end date [48:33] Simple moments with family Connect with Leah Connect with Cortney 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.    

#14 Frank and Anna Jaworski's baby, Alex, was born in 1994 and was seemingly ok...to the doctors and nurses. Frank and Anna disagreed. Alex was showing many symptoms of concern including not feeding well, tachycardia, not gaining weight, jaundice, and lethargy. Frank and Anna were continuously gaslighted until Alex's problems became emergent at just two months old. From there, a miracle began to take shape as Alex eventually landed in the right doctor's arms and a diagnosis was made: hypoplastic left heart syndrome. Alex would undergo three open-heart surgeries in before he was 18 (we cover two in this episode) all at University Hospital in San Antonio, Texas.This story is an incredible story of hope and highlights the importance of listening to your instinct and advocating for your child(ren). Anna speaks interchangably about Alex and Hope. Alex made the transition to a woman in her early 20s and now goes by Hope. I hope to have Hope on this podcast soon.Anna is now a fierce advocate for those suffering with congential heart defects. You can find her, her podcasts, and other resources at www.heartsunitetheglobe.orgHer publishing company is www.babyheartspress.com. Medical terms used in this podcast include:Hypoplastic left heart syndromesingle ventricle Norwood procedurebi-directional GlennHemi-Fontan procedureB-T-T shunt (Blalock-Thomas-Thomas shunt)Dr. Park was Alex's former cardiologistDr. John Calhoon is Alex's cardiothoracic surgeonASD = atrial septal defectVSD = ventricular septal defectTGA = transposition of the great arteriesPDA = patent ductus arteriosusPFO = patent foramen ovaleAnna's books:"Hypoplastic Left Heart Syndrome: A Handbook for Parents""The Heart of a Mother""The Heart of a Father""The Heart of a Heart Warrior" (this is my newest book)websites:www.heartsunitetheglobe.orgwww.babyheartspress.comWebsite: The Heart Chamber (theheartchamberpodcast.com)Transcript: Joyful Beat | The Heart Chamber (theheartchamberpodcast.com) The Heart Chamber (@theheartchamberpodcast)Thanks to Michael Moeri for being my right hand man. Michael Moeri - Audio Editor, Podcast Producer and Marketing Director

In this episode we are joined by Vinh Nguyen to talk about parenting children with Down syndrome. Vinh is a PhD student at McMaster Divinity College, and has served as a pastor in different capacities for over ten years. He is married with three children, one of whom is his daughter, Alli, who has Down syndrome. At the outset of our conversation, Vinh tells us about the circumstances surrounding the news from their OBGYN before Alli was born that she had Hypoplastic Left Heart Syndrome as well as Down syndrome, and the miraculous story of how the left side of her heart formed despite what doctors told them. Vinh shares with us many things that he has learned from his daughter, including about the nature of prejudice, and he also dispels many myths that people have about Down syndrome. We also discuss the matters of ritual participation in the eucharist and baptism, and the implications of resurrection for how we think about the personhood of people with Down syndrome. Team members on the episode from The Two Cities include: Dr. John Anthony Dunne.

As we celebrate American Heart Month, heart mama and two-time cancer survivor, Kasie Marek, speaks openly and honestly about what it's like to have a son with Hypoplastic Left Heart Syndrom (HLHS). We have a beautiful discussion about the realities of caring for a child with a serious and rare heart condition. In this episode, we chat about: What is Hypoplastic Left Heart Syndrome (HLHS)? How does HLHS affect a family: emotionally, logistically and financially? What are the treatment options available for HLHS? What are the effects of a heart transplant on a family? What's the best advice for a fellow heart mama? Kasie Marek is a medical mom trying to figure it all out, one day at a time. A two-time childhood cancer survivor who entered the “nurse" mom world after her first-born, Noah, was born with Hypoplastic Left Heart Syndrome (HLHS). Now, she's trying to navigate the everyday life of medical to-do lists, while still being a MOM, WIFE, and prioritizing self-care. Connect with Kasie: Instagram: @laughingafterlemons Facebook: https://www.facebook.com/kasiehelpzkidz/ Websites: www.laughingafterlemons.com and www.khkidz.org 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 and Spanish. Connect with Hand to Hold: Learn more or get support at handtohold.org Follow Hand to Hold on social media: Facebook: facebook.com/handtohold Instagram: @handtohold    Twitter: @NICUHandtoHold YouTube: @HandtoHold    The following music was used for this media project: Music: Thriving Together [Full version] by MusicLFiles Free download: https://filmmusic.io/song/10332-thriving-together-full-version License (CC BY 4.0): https://filmmusic.io/standard-license   Music: Bright Colors Of Life by MusicLFiles Free download: https://filmmusic.io/song/7855-bright-colors-of-life License (CC BY 4.0): https://filmmusic.io/standard-license  

Dr. Timothy Nelson is the founder of HeartWorks, an organization that developed from the Todd & Karen Wanek Family Program for Hypoplastic Left Heart Syndrome founded at the Mayo Clinic in 2010. Tim's work specializes in the creation of stem cells to create heart muscle and hopefully cure pediatric congenital heart defects in the near future.The HeartWorks team has developed a platform that enables multiple cell-based clinical trials to be conducted simultaneously in collaboration with a consortium of world-class medical institutions. Check out this short video that chronicles the transformative technology of bioengineered cardiac tissue by converting a piece of skin from an individual to a beating heart muscle.Dr. Nelson earned his MD and his Doctor of Philosophy from the Medical College of Wisconsin, and he's been a physician at the Mayo Clinic in Rochester, MN since 2005In this episode, Dr. Nelson dives into the incredibly exciting technology that he and his team at HeartWorks are working on in an effort to create positive outcomes for those born with congenital heart defects. Statistics show that 1 in 100 children are born with a congenital heart defect and 1 in 4 of those born with a CHD will require a life-saving surgical procedure within their first year of life. Even with these interventions, 50% of children born with CHD won't make it to their fifth birthday. HeartWorks is working tirelessly to give children and adults with CHD a promising and fulfilling future. Dr. Nelson explains what exactly stem cells are, and how they are being used to have the potential to rebuild the heart. This is a fascinating episode, and I know you won't want to miss it.Quote from the episode: “We are on the tip of an iceberg and when we show this model can work, it is catalytic” - Dr. Tim Nelson***Upcoming Event **Want to do something fun and support the cutting-edge development of "self-grown" stem cells that will one day cure Congenital Heart Defects at the same time?Join us, along with Tim Nelson, MD/PhD, and former NFL star and Fox broadcast color analyst, Greg Olsen for a virtual dinner on February 23.Make some great food, drink some great wine (all provided with your registration), and learn about the future of medicine! Register here.Connect with Dr. Tim Nelson:Website: heartworksinc.orgPodcast: Cause2CureLinkedIn: Timothy NelsonFacebook: Timothy NelsonTo Connect with Mike: Website LinkedIn Instagram Twitter YouTube Coaching Get Mike's book: Owner Shift Please LIKE

Dr. Timothy Nelson is the founder of HeartWorks, an organization that developed from the Todd & Karen Wanek Family Program for Hypoplastic Left Heart Syndrome founded at the Mayo Clinic in 2010. Tim's work specializes in the creation of stem cells to create heart muscle and hopefully cure pediatric congenital heart defects in the near future.The HeartWorks team has developed a platform that enables multiple cell-based clinical trials to be conducted simultaneously in collaboration with a consortium of world-class medical institutions. Check out this short video that chronicles the transformative technology of bioengineered cardiac tissue by converting a piece of skin from an individual to a beating heart muscle.Dr. Nelson earned his MD and his Doctor of Philosophy from the Medical College of Wisconsin, and he's been a physician at the Mayo Clinic in Rochester, MN since 2005In this episode, Dr. Nelson dives into the incredibly exciting technology that he and his team at HeartWorks are working on in an effort to create positive outcomes for those born with congenital heart defects. Statistics show that 1 in 100 children are born with a congenital heart defect and 1 in 4 of those born with a CHD will require a life-saving surgical procedure within their first year of life. Even with these interventions, 50% of children born with CHD won't make it to their fifth birthday. HeartWorks is working tirelessly to give children and adults with CHD a promising and fulfilling future. Dr. Nelson explains what exactly stem cells are, and how they are being used to have the potential to rebuild the heart. This is a fascinating episode, and I know you won't want to miss it.Quote from the episode: “We are on the tip of an iceberg and when we show this model can work, it is catalytic” - Dr. Tim Nelson***Upcoming Event **Want to do something fun and support the cutting-edge development of "self-grown" stem cells that will one day cure Congenital Heart Defects at the same time?Join us, along with Tim Nelson, MD/PhD, and former NFL star and Fox broadcast color analyst, Greg Olsen for a virtual dinner on February 23.Make some great food, drink some great wine (all provided with your registration), and learn about the future of medicine! Register here.Connect with Dr. Tim Nelson:Website: heartworksinc.orgPodcast: Cause2CureLinkedIn: Timothy NelsonFacebook: Timothy NelsonTo Connect with Mike: Website LinkedIn Instagram Twitter YouTube Coaching Get Mike's book: Owner Shift Please LIKE

Psychotherapist Tracy Livecchi, LCSW, joins Paul Cardall to discuss healing hearts and minds of people born with an illness that requires a life time of medical care. Both Tracy and Paul were born with complex congenital heart defects. Although congenital heart disease or CHD is the least funded of all major illnesses, CHD remains the leading cause of infant related deaths. However, because of advancements in medicine and technology millions of people have survived and adapt to what would be considered a normal life, although their lives have required a life-time of medical care and surgical procedures. They swap stories and go into detail about the miracle of life and how Tracy's parents were instrumental in working with doctors to secure her survival. Because of the lack of information for lifelong patients, Tracy and her colleague Liza Morton, PhD have written "Healing Hearts and Minds: A Holistic Approach to Coping Well With Congenital Heart Disease." ABOUT TRACY LIVECCHI, LCSWTracy writes on her website: In terms of my training, I received my Masters Degree in Social Work from Rutgers University. I have worked in a variety of settings as a private therapist, a clinical director, as well as a consultant for long-term care and hospital settings. I have been working as a psychotherapist in private practice since 1998, and currently provide psychotherapy to individual adults, adolescents, and couples in my Westport practice. I work from an eclectic theoretical orientation and provide supportive counseling while also utilizing cognitive, behavioral, psychodynamic and trauma informed, mindfulness approaches, when appropriate. I am the Mental Health Consultant for the Adult Congenital Heart Association's Peer Mentorship Program and speak nationwide on the importance of addressing the psychosocial effects of heart disease. I am passionate about mental health access for all and have a special interest in working with individuals and their families dealing with serious and chronic illness. I live in CT with my husband and two daughters. Website: https://tracylivecchi.com/GET THE BOOK: Healing Hearts & MindsACHA or ADULT CONGENITAL HEART DISEASE ASSOCIATION  ABOUT THE HOST PAUL CARDALLhttp://www.paulcardall.comhttp://www.facebook.com/paulcardallmusichttp://www.youtube.com/cardallhttp://www.instagram.com/paulcardall LISTEN TO HIS MUSICAPPLE MUSIC - https://music.apple.com/us/artist/paul-cardall/4312819SPOTIFY - https://open.spotify.com/artist/7FQRbf8gbKw8KZQZAJWxH2AMAZON - Ask Alexa to play Peaceful Piano by Paul Cardall Paul Cardall is an artist who has given a new meaning to the phrase, a change of heart and how he used this radical change to take his music to an unexpected place.  Despite being born with a potentially life-threatening heart defect Paul Cardall has become a world recognized pianist. He is even endorsed by Steinway & Sons as one of the finest pianist of our time. A Dove award winner for his Christmas album, Paul's recordings have debuted on 11 No. 1 Billboard charts along with 46 other chart debuts. His music has 25 million monthly listeners with more than 3 billion lifetime streams and is often categorized as Classical, Christian, and Holiday. Although most of albums are instrumental, Paul has songs that feature Grammy winning gospel legend CeCe Winans, Matt Hammitt (Sanctus Real), Kristin Chenoweth, Country duo Thompson Square, David Archuleta, Tyler Glenn (Neon Trees), Audrey Assad, Steven Sharp Nelson (The Piano Guys), and more.    Paul has performed for audiences worldwide including the White House. Forbes, American Songwriter, Jesus Calling, Lifestyles Television, Mix Magazine, and countless other media outlets have share his remarkable journey of receiving a life changing heart transplant and using music as a tool to help God heal spiritual, mental, and emotional hearts.

Following a normal first trimester, a pregnant patient starts spotting. The patient's care provider books an urgent ultrasound to see what is causing the bleeding. The main concerns are if the spotting is caused by a miscarriage or something else.Following the ultrasound, the technician calls in obstetrician Dr. Ashley Brant to review the results with the patient. There is a problem with the fetus' heart — specifically, a condition called hypoplastic left heart syndrome. Essentially, the left side of the heart doesn't develop normally and can't pump blood in the way that it should.Hypoplastic left heart syndrome causes poor oxygenation, meaning the skin can be bluish or with dark discolorations. It also causes difficulty breathing, feeding, and lethargy. Treatment includes multiple surgeries after birth, and can even require a heart transplant. Without treatment, the condition is fatal.The patient is offered genetic testing to determine if the heart condition is a symptom of a larger genetic disease. Regardless, the prognosis is grim.The patient meets with Dr. Brant to discuss all of the options, including continuing or ending the pregnancy. “I think everybody who's in a situation where they're thinking about ending a pregnancy because of a major fetal anomaly, they are thinking about what is the kindest decision, the most loving decision that they can make for their baby,” shared Dr. Brant. “Nobody wants to be in this position. And they're thinking about what the experience is going to be like for this child.”The patient makes the decision to end the pregnancy through the dilation and evacuation method. However, the procedure cannot be performed in the state because of a heartbeat law in place at the time. And so Dr. Brant refers the patient to an out-of-state clinic where the initial procedure to stop the heartbeat can be performed. But, in order to be where the patient has the support of the medical team she knows and who has been by her side, the patient returns to her home state for the final procedure. “No one ever envisions themselves needing an abortion. No one ever thinks, ‘I want to have an abortion,' before they're in a position of needing one. I would just encourage compassion and empathy and trying to understand the life that someone else might be walking in.”

Why would a heart mom work for a CHD organization?  What would prompt a young woman to leave her career and work for the same organization? How does this organization help families affected by CHD?Kate Stacy and Sydney Philpott-Streiff both work at Ollie Hinkle Heart Foundation, a nonprofit committed to year-round support for families and children affected by pediatric heart disease. Kate is mom to six-year-old Stella, born with Hypoplastic Left Heart Syndrome in 2015. She underwent three open-heart surgeries at two days, 4 months, and 3 years of age. In her early months, she was hospitalized frequently with GI issues but has been very active, happy, and healthy since her last OHS. Kate and her husband Adam also have twins born via IVF, Connor, and Ellie, aged 8 years. Sydney was unexpectedly diagnosed with a CHD at age 27. She was on a morning run with her husband Andy when she went into cardiac arrest. Andy performed CPR until paramedics arrived. Sydney was in a coma for 48 hours and needed open heart surgery. Although her recovery was challenging, Andy and Sydney are expecting their first child in January.  In this episode, they talk about their experiences working with the Ollie Hinkle Heart Foundation.Helpful OHHF links:Ollie Hinkle Heart Foundation website:  www.theohhf.orgInstagram: @kestacy, @sydthekyd92, @theohhfRegistration for Take Heart: https://meetingtomorrow.com/webcast/TakeHeart2022Sydney's Story Video: https://www.youtube.com/watch?v=Uus76Zj_AE4Please visit our Heart to Heart with Anna Social Media and Podcast pages:Apple Podcasts: https://itunes.apple.com/us/podcast/heart-to-heart-with-anna/id1132261435?mt=2Facebook: https://www.facebook.com/HearttoHeartwithAnna/Instagram: https://www.instagram.com/hearttoheartwithanna/MeWe: https://mewe.com/i/annajaworskiTwitter: https://twitter.com/AnnaJaworskiYouTube: https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5ZwMusic thanks to the Baby Blue Sound Collective - https://music.apple.com/us/album/home-tonight-forever/1201349904If you enjoy this program and would like to be a Patron, please check out our Patreon page: https://www.patreon.com/HeartToHeartSupport the show

Kelly – TFMR Mamas Stories- 10 years after saying goodbye to baby Ella. Kelly and I recorded this conversation last year and this year marks 10 years since Kelly said goodbye to baby Ella and we have decided to release this on her 10 year anniversary as a podcast to honour her memory. Kelly already had a living child and was pregnant with her second child, it never entered Kelly's head that something like this could happen to her and her family. After the 12-week scan came the first indication that there was a health condition with the baby she was carrying with a 1 in 5 chance that there was a chromosomal condition. After the initial NIPT test the results came back all low risk and they were told that everything was looking fine. Despite receiving the news that everything was fine Kelly entered the 20-week scan so anxious and this has been carried with her and will remain with her and did remain with her throughout the rest of the pregnancy and her subsequent pregnancy. At the 20 weeks scan the sonographer tells them the sex of their baby and then started to take a closer look at the heart and that they could see something wasn't quite right that they need to raise this with a consultant. This news came on a Friday at 5pm, so Kelly had to wait until the next day to see Fetal medicine where she was told that her baby girl had Hypoplastic left heart syndrome (HLHS), where the very best option would be a heart transplant and their baby may not make it to and past birth. After seeking a second opinion at a specialised London hospital they made the heart-breaking decision to say goodbye to their precious baby Ella and make the arrangements to have a termination for medical reasons. Directly following the birth of Ella, Kelly experienced medical complications which overshadowed how Kelly was able to interact with Ella in those precious moments after birth. We talk about the importance of health care professionals offering all possible options, opportunities and chances to the parents for making decisions, making memories and gathering information on their babies as these moments only happen once. Kelly also shares with me how she honours Ella and holds her memory and how Ella is a part of their family with their living children.. Thank you so much for sharing your precious baby with me x x x You can find more details of how to access our support groups HERE If you would like to financially support the work we do, you can find the link HERE to find something that feels right for you. Thank you so much for any support you can offer and for listening to help raise awareness and provide support to parents who have lost their babies due to Termination for medical reasons, Termination due to maternal/birthing persons health. Register to receive info on Support groups Website www.tfmrmamas.com Instagram @tfmrmamas facebook @tfmrmamas Twitter @tfmrmamas --- Send in a voice message: https://anchor.fm/tfmr-mamas/message

Our guest today is someone so near and dear to our hearts. Jessica is the mom of 3 beautiful children. Her oldest son, Dylan, is the little boy who received Tayzli's heart. She tells us her story today, about being given Dylan's diagnosis of Hypoplastic Left Heart Syndrome,  while she was pregnant with him. Not knowing what the future would look like with her little baby, Jessica and her husband JP held onto the hope of having their little baby for as long as possible. She told us about the surgeries and procedures they endured, being put on the transplant list, and all the unknowns of waiting for a heart while watching their little boy get sicker and sicker. Jessica also talked about learning about Tayzli and being able to meet her family and the feelings and emotions that happen with organ donation. It was such an honor to talk with Jessica and to hear her side, hear about the struggles Dylan had, and how they are doing now. Thank you Jess for being so vulnerable and sharing your story with us all. We love you!!XOXOWhit + Kels

When you're pulled between the feelings of what you wish would be different, better, or more, and faced with a moment where a decision has to be made, it can be challenging to cut through all of the emotion and lean into trust. In this week's Takeaways & Reflections episode, I use Kasey and Michelle's stories to illustrate the challenges we can have with trust, not only in our own inner guidance but also that there potentially is something better waiting for us on the other side of leaning into trust. Could you use a little more trust, and maybe surrendering, in your life? I hope you go back and listen to Kasey and Michelle's inspiring stories of trusting themselves; what they know to be right and true in the present moment, because that's all we're all really guaranteed, anyway.RESOURCES:Ep 103 Kasey Carmona Ep 104 Michelle MarshDo Grief Differently™️______NEED HELP?National Suicide Prevention Lifeline: 1-800-273-8255Crisis Text Line provides free, 24/7 support via text message. Text HOME to 741741 to connect with a trained Crisis CounselorIf you or anyone you know is struggling with grief due to any of the 40+ losses, free resources are available HERE.Enjoying the podcast? You may also enjoy my bi-weekly newsletter, The Unleashed Letters.

Warning: This episode contains a mother's account of her son, CJ's, final days of life. This may be difficult for some listeners to hear, particularly those who have lost a child. 99 Days. How much life can you squeeze out of 99 precious newborn days? Especially when 84 of those are spent in the hospital? Kabuki, a major theatrical form in Japan for four centuries, became less of a theatrical experience and more of a grieving one. Kabuki Syndrome (a rare genetic syndrome), named in part after facial art depicted in Kabuki theatre, expresses itself with distinct facial features including large eyes and long lashes. CJ would not only fight to stay alive with Kabuki, but due to Kabuki, he was also born with half a heart (hypoplastic left heart syndrome), 3 kidneys, and a cleft palate. The odds were stacked against CJ and his family. Kasey and her husband did whatever they could for their son. However, when it became clear that they were going to have to have procedures done to CJ, that was their sign that they weren't honoring CJ's spirit or his life. They came to accept the truth of their son's young life and decided to take him home with oxygen support only. Kasey could have never anticipated that the day they took CJ home on hospice care would be the first day he would truly be living. For six days, they loved as they had never loved. And, they found peace in their sorrow; believing that the gift of CJ's life was to highlight the abundance in the present moment. We often torture ourselves with questions we will never know the answer to. And, with odds of .032% of this diagnosis, "Why?" is a question with no answer. Scientifically, it comes down to one tiny missing gene. In the contrast, we can recognize the fragility of life and its magnificence, too. "Part of living the abundance of life is experiencing loss." - Kasey Carmona in a Valentine's letter to CJRESOURCES:Kabuki SyndromeHypoplastic Left Heart SyndromeBook, The Invisible StringEp 40 Dr. Chris KerrNOT MENTIONED BUT HELPFUL:Book, When Children GrieveBook, The Grief Recovery HandbookCONNECT WITH KASEY:InstagramAdditional Links ______NEED HELP?If you or anyone you know is struggling with grief, substance use disorders, or a mental health challenge, free resources are available HERE and HERE.Enjoying the podcast? You may also enjoy my bi-weekly newsletter, The Unleashed Letters.CONNECT WITH VICTORIA: InstagramFacebookLinkedInSupport the show

When you have a child with a heart defect, you live with fear every day. And yet, you have to live your life and you have to lean into hope. -Diane Pickles Diane Pickles admits that a little voice inside her head thought something might be wrong with the unborn child she was carrying. The year was 1994 and she and her husband William had a healthy three year old son at home when an ultrasound revealed that their baby had Hypoplastic Left Heart Syndrome, meaning that he had half a heart. Doctors suggested a late term abortion, but that was not an option for the couple. Instead: they picked option 2: a series of experimental surgeries which up until then, had shown little success. Today, their son Jake is 27, making him one of the oldest patients with this heart defect in the world. Diane has made it her life's mission to assist and educate heart families and to forward research that maps genomes which cause congenital heart defects. The Program Director of Project Singular at Additional Ventures, she has also worked tirelessly for the American Heart Association, was appointed to the board of the Directors of the American Board of Pediatrics, and was a key player in successfully passing legislation to end smoking in restaurants. In this interview, Diane opens her heart to talk about what it's like to lovingly raise a child with only half a heart. Born and raised in faith, Diane follows her father's 10 Guidelines for Life which he wrote on his 70th birthday. Her favorite is #10: Share your gifts, be heard, give back. Says Diane: I have always believed that if I can make this path easier for someone else, I'm gonna do it. For 23 minutes of inspiration, just hit that download button. #heartdefects #specialneedschildren #humangenomes

How can we best partner with patients and families to make sure they are comfortable taking their kids home from the hospital, particularly after a long or complicated stay? Simulation may be the answer. On this Simulation Sessions with Dr. Samreen Vora, listen as she interviews two of our Kid Experts at Children's Minnesota about the innovative curriculum they developed using simulation to support families going home with children with congenital cardiac problems. Follow along on this journey highlighting examples of success to think about how you might adapt similar models for your practice with patients and families with complex medical needs.View the transcript here: https://www.childrensmn.org/for-health-professionals/talking-pediatrics-podcast/talking-pediatrics-sim-sessions-samreen-caregivers-kids-hypoplastic-left-heart-syndrome-1-28-22/

What is being done in 2022 to help children born with hypoplastic left heart syndrome (HLHS)? Is it possible to consider there may be a day when heart defects can actually be cured? What event is occurring on February 3, 2022 to raise funds to stamp out congenital heart defects?Dr. Timothy Nelson is the director of the Todd and Karen Wanek Family Program for HLHS at Mayo Clinic. Dr. Nelson's research work is focused on cardiovascular regeneration using bioengineered stem cells to improve the ability to discover, diagnose, and ultimately treat mechanisms of degenerative diseases. As director of the program, Dr. Nelson and his team are specifically interested in the cause of HLHS and finding ways to delay and prevent heart failure for individuals with HLHS. To better understand and treat this congenital heart disease, the program has taken a multifaceted approach that includes research into stem cells, genetics, imaging tools, and the creation of a biorepository. The program has launched clinical trials using autologous stem cells, also known as stem cells collected from an individual's own body.In June 2020, “HeartWorks” was created to accelerate and expand the product development undertaken by the program at the Mayo Clinic. This episode includes discussion about Dr.  Timothy Nelson's research as well as a conversation about an important, upcoming fundraising event. Links mentioned in the podcast:Jennifer Gutman on "Heart to Heart with Anna" talking about her HLHS child's participation in the Mayo Clinic's stem cell research project  Dr. Timothy Nelson on "Heart to Heart with Anna" in Season 9.A Cure is in the Works CelebrationTodd and Karen Wanek Family Program for HLHSPlease visit our Social Media and Podcast pages:Apple Podcasts -- https://itunes.apple.com/us/podcast/heart-to-heart-with-anna/id1132261435?mt=2Facebook -- https://www.facebook.com/HearttoHeartwithAnna/Instagram -- https://www.instagram.com/hearttoheartwithanna/MeWe -- https://mewe.com/i/annajaworskiTwitter -- https://twitter.com/AnnaJaworskiYouTube -- https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5ZwWebsite -- https://www.hug-podcastnetwork.com/Anna's Buzzsprout Affiliate Link (we both benefit if you sign up with Buzzsprout with my link - yay!) Support the show (https://www.patreon.com/HearttoHeart)

This week on the podcast we have one of the oldest survivors of Hypoplastic Left Heart Syndrome! Despite his condition, Andrew Donnellon went on to play NCAA football and many other sports throughout his life. He might have half of a heart, but made our hearts full by learning what he goes through and does, to stay positive! --- Support this podcast: https://podcasters.spotify.com/pod/show/dummywiththedetails/support

Curis is an oncology company trying to develop an inhibitor of IRAK-4. They have shown positive results in AML/MDS in spliceosome/FLT3 mutation patients as well as their non-target group. This will hopefully allow them to get accelerated approval with the FDA but they still have some hurdles to overcome. Longeveron is a cell therapy company looking to develop their Medicinal Signaling Cell therapy, Lomacel-B, in aging patients. They are focusing on Alzheimer's Disease, Aging Frailty as well as Hypoplastic Left Heart Syndrome, but there's something off that makes me question the therapy's potential. Help out the show (or join the discord) by becoming a patron at: https://www.patreon.com/breakingbiotech Follow me on twitter @matthewlepoire Send me an email matthewlepoire@gmail.com www.breakingbiotech.com #breakingbiotech Disclaimer: All opinions expressed by Matt (or his guests) in this podcast are solely his (their) opinions. You should not treat any opinion expressed by Matt in this podcast as a specific inducement to make a particular investment or follow a particular strategy, but only as an expression of his opinion. Matt's opinions are based upon information he considers reliable, but Matt cannot warrant its completeness or accuracy, and it should not be relied upon as such. Matt is not under any obligation to update or correct any information provided in this podcast. Past performance is not indicative of future results. Matt does not guarantee any specific outcome or profit. You should be aware of the real risk of loss in following any strategy or investment discussed in this podcast. #biotech

How does having obstacles to playing sports affect a boy's feelings of self-worth when growing up? In what ways can a young man feed his desire for sports and athletics, even if his body isn't able to do what his mind wishes he could do? How can an adult Heart Warrior enjoy a passion for sports when he only has half a heart?Michael Hills was born in February of 1998 in Ontario, Canada. He was diagnosed with Hypoplastic Left Heart Syndrome when he was five and a half months old. He has had three surgeries: a Norwood at nearly six months, a Glenn at nine months, and a Fontan at two years and four months of age. Ever since the last surgery, he has enjoyed good health. Michael has a passion for sports and played on several sports teams during his school days. Since leaving school, he has studied sports management and sport and event marketing and currently works for a variety of sports clubs and teams. He also enjoys traveling to different countries. Michael wants to share his story about how sports allowed him to live a life with joy and a sense of normalcy, and to show a healthy, active life with complex CHD is possible. Links mentioned in the episode:Links Michael sent me to better understand curlingJoanne Courtney Explains Curling Shoe Grippershttps://www.youtube.com/watch?v=igG5WyPvyDoSuper Sweeper Joanne Courtney critiques sweeping techniquehttps://www.youtube.com/watch?v=1iZbrteHx1oPlease visit our Social Media and Podcast pages:Apple Podcasts: https://itunes.apple.com/us/podcast/heart-to-heart-with-anna/id1132261435?mt=2Facebook: https://www.facebook.com/HearttoHeartwithAnna/Instagram: https://www.instagram.com/hearttoheartwithanna/MeWe: https://mewe.com/i/annajaworskiTwitter: https://twitter.com/AnnaJaworskiYouTube: https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5ZwWebsite: https://www.hug-podcastnetwork.com/Anna's Buzzsprout Affiliate Link: https://www.buzzsprout.com/?referrer_id=16817 (we both benefit if you sign up with Buzzsprout with my link - yay!)Support the show (https://www.patreon.com/HearttoHeart)

My guest this episode is my beautiful wife, Monica Monay. She goes by Mony. Our conversation this episode we dive into our road to becoming parents and how we are coping with our child's diagnosis of Hypoplastic Left Heart Syndrome. We hope you enjoy this episode. It's one of my favorites. We are very honest, transparent, and vulnerable. If you would like to know a little more on hypoplastic left heart syndrome. https://youtu.be/K8YJLqAGG-s to donate to Luciana's Heart Warrior Fund https://gofund.me/9aeb3a06

Mom Jess recounts the birth story of her daughter Addy, from their planned pregnancy during the pandemic and her pregnancy being perfect until around 30 weeks. Jess tells about how she became more swollen and gained 22 lbs in 2 weeks, and one of her non-stress tests came back abnormal. They discovered that Addy had a severe case of hydrops, where there was a lot of fluid buildup in her body, and Jess also had developed Mirror Syndrome (mimics preeclampsia), where as Addy became sicker, so did Jess. Jess and her husband Patrick decide on a Caesarean section, since Jess was getting so sick, so Addy was born on October 8, 2020. Addy was later diagnosed with hypoplastic left heart syndrome, where the left side of her heart stopped developing, as well as underdeveloped lungs, from either being too early or from the hydrops. Addelyn deteriorated within 8 hours of her birth and passed away peacefully, surrounded by her parents. DONATE $5 (aka "buy us a coffee/hot cocoa") to support the continued production of these stories. We appreciate all the help toward production and hosting costs. Or if you want to purchase an "Always a Part of Us" Legacy Gift for $20, you'll be providing to one of these families that shares their story, full transcriptions, mp3s, and mp4s of the recordings of their baby's birth story and advice episodes for their family history records. You will also get a shout-out on an upcoming episode. Thank you! Donate: Ko-fi.com/stillapartofus Time Stamps: 00:00 Addelyn Renee 01:49 Introduction of Jess and Patrick 04:38 Pregnancy 08:28 Anatomy Scan 15:37 30-Week Appointment 24:29 Mirror Syndrome 30:50 C-section 41:58 Saying goodbye 49:58 Spending time with Addy after her passing 54:04 Discharge and home 01:03:51 Autopsy SUBSCRIBE to our YouTube channel for more birth stories from families who have experienced a stillbirth or infant loss. We're grateful that you're part of our community! https://www.youtube.com/stillapartofus SUBSCRIBE to our podcast Still A Part of Us, wherever you find podcasts. Links: Website: http://stillapartofus.com/ Grief Support Groups: https://nationalshare.org/ Music: "Flickering Flame" by Josh Woodward. Free download: http://joshwoodward.com/​​. #fetaldhyrops #mirrorsyndrome #birthstory #infantloss #infantdeath #babydeath #stillmychild #csection #podcast #hypoplasticleftheartsyndrome #HLHS #birthstories #babyloss #mybabydied #bereavedmother #bereavedfather #infantlossawareness #dadsgrievetoo #mamasgrief #pals #childloss #lifeafterloss #saytheirnames #babylossawareness #breakingthesilence #grievingmom #grievingdad #bereavedparents #pregnancyandinfantlossawarenessmonth

Anna Jaworski is an author, publisher and public speaker. Most importantly, Anna Jaworski is the mother of two sons -- one who has a severe, congenital heart defect (CHD) known as "hypoplastic left heart syndrome."Anna has written two books: Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation. She is a contributor to The Heart of a Mother -- an anthology of stories by mothers affected by CHDs. Anna also edited both The Heart of a Mother and The Heart of a Father (the companion book to The Heart of a Mother.) Anna Jaworski has also contributed to two medical textbooks on hypoplastic left heart syndrome and a nursing magazine.Anna Jaworski is not a nurse or a doctor. She is a mother who has made it her goal in life to help other families of children with CHDs. To do so, in addition to producing helpful resources through her publishing company Baby Hearts Press, she has also worked with Sue Dove (another "heart mom") to create two websites: www.babyheartspress.com and www.congenitalheartdefects.com******************************************************************To listen to all our XZBN shows, with our compliments go to: https://www.spreaker.com/user/xzoneradiotv*** AND NOW ***The ‘X' Zone TV Channel on SimulTV - www.simultv.comThe ‘X' Chronicles Newspaper - www.xchroniclesnewspaper.com ******************************************************************

Katie, Certified Child Life Specialist talks with Cortney Given, Life Coach and Host of the Mindset for Medical Moms Podcast. Cortney could have never guessed that the high school paper she wrote HLHS would be given to her second daughter. Having just moved to Hawaii to start a family adventure, Cortney and her daughter had to relocate back to California for medical care.  In this episode, we talk about: +How living apart from her oldest daughter and husband to seek medical care was challenging and what their reunion was like +Focusing on gratitude helped her state focused and move forward each day +She used her experience and now helps other moms facing similar situations. Follow along with Cortney and and make sure to follow her on Instagram. Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here. Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child's unique experiences. We give you strategies to support yourself and your family through life's challenges. We are so glad you are here. Child Life On Call | Instagram | Facebook | Twitter

Hypoplastic Left Heart Syndrome - Anna Jaworski is an author, publisher and public speaker. Most importantly, Anna Jaworski is the mother of two sons -- one who has a severe, congenital heart defect (CHD) known as "hypoplastic left heart syndrome."Anna has written two books: Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation. She is a contributor to The Heart of a Mother -- an anthology of stories by mothers affected by CHDs. Anna also edited both The Heart of a Mother and The Heart of a Father (the companion book to The Heart of a Mother.) Anna Jaworski has also contributed to two medical textbooks on hypoplastic left heart syndrome and a nursing magazine.Anna Jaworski is not a nurse or a doctor. She is a mother who has made it her goal in life to help other families of children with CHDs. To do so, in addition to producing helpful resources through her publishing company Baby Hearts Press, she has also worked with Sue Dove (another "heart mom") to create two websites: www.babyheartspress.com and www.congenitalheartdefects.com For Your Listening Pleasure all the radio shows available on The 'X' Zone Broadcast Network with our compliments, visit - https://www.spreaker.com/user/xzoneradiotv. Our radio shows archives and programming include: A Different Perspective with Kevin Randle; Alien Cosmic Expo Lecture Series; Alien Worlds Radio Show; America's Soul Doctor with Ken Unger; Back in Control Radio Show with Dr. David Hanscom, MD; Connecting with Coincidence with Dr. Bernard Beitman, MD; Dick Tracy; Dimension X; Exploring Tomorrow Radio Show; Flash Gordon; Imagine More Success Radio Show with Syndee Hendricks and Thomas Hydes; Jet Jungle Radio Show; Journey Into Space; Know the Name with Sharon Lynn Wyeth; Lux Radio Theatre - Classic Old Time Radio; Mission Evolution with Gwilda Wiyaka; Paranormal StakeOut with Larry Lawson; Ray Bradbury - Tales Of The Bizarre; Sci Fi Radio Show; Seek Reality with Roberta Grimes; Space Patrol; Stairway to Heaven with Gwilda Wiyaka; The 'X' Zone Radio Show with Rob McConnell; Two Good To Be True with Justina Marsh and Peter Marsh; and many other! That's The ‘X' Zone Broadcast Network Shows and Archives - https://www.spreaker.com/user/xzoneradiotv

Hypoplastic Left Heart Syndrome - Anna Jaworski is an author, publisher and public speaker. Most importantly, Anna Jaworski is the mother of two sons -- one who has a severe, congenital heart defect (CHD) known as "hypoplastic left heart syndrome."Anna has written two books: Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation. She is a contributor to The Heart of a Mother -- an anthology of stories by mothers affected by CHDs. Anna also edited both The Heart of a Mother and The Heart of a Father (the companion book to The Heart of a Mother.) Anna Jaworski has also contributed to two medical textbooks on hypoplastic left heart syndrome and a nursing magazine.Anna Jaworski is not a nurse or a doctor. She is a mother who has made it her goal in life to help other families of children with CHDs. To do so, in addition to producing helpful resources through her publishing company Baby Hearts Press, she has also worked with Sue Dove (another "heart mom") to create two websites: www.babyheartspress.com and www.congenitalheartdefects.com For Your Listening Pleasure all the radio shows available on The 'X' Zone Broadcast Network with our compliments, visit - https://www.spreaker.com/user/xzoneradiotv. Our radio shows archives and programming include: A Different Perspective with Kevin Randle; Alien Cosmic Expo Lecture Series; Alien Worlds Radio Show; America's Soul Doctor with Ken Unger; Back in Control Radio Show with Dr. David Hanscom, MD; Connecting with Coincidence with Dr. Bernard Beitman, MD; Dick Tracy; Dimension X; Exploring Tomorrow Radio Show; Flash Gordon; Imagine More Success Radio Show with Syndee Hendricks and Thomas Hydes; Jet Jungle Radio Show; Journey Into Space; Know the Name with Sharon Lynn Wyeth; Lux Radio Theatre - Classic Old Time Radio; Mission Evolution with Gwilda Wiyaka; Paranormal StakeOut with Larry Lawson; Ray Bradbury - Tales Of The Bizarre; Sci Fi Radio Show; Seek Reality with Roberta Grimes; Space Patrol; Stairway to Heaven with Gwilda Wiyaka; The 'X' Zone Radio Show with Rob McConnell; Two Good To Be True with Justina Marsh and Peter Marsh; and many other! That's The ‘X' Zone Broadcast Network Shows and Archives - https://www.spreaker.com/user/xzoneradiotv

Hypoplastic Left Heart Syndrome - Anna Jaworski is an author, publisher and public speaker. Most importantly, Anna Jaworski is the mother of two sons -- one who has a severe, congenital heart defect (CHD) known as "hypoplastic left heart syndrome."Anna has written two books: Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation. She is a contributor to The Heart of a Mother -- an anthology of stories by mothers affected by CHDs. Anna also edited both The Heart of a Mother and The Heart of a Father (the companion book to The Heart of a Mother.) Anna Jaworski has also contributed to two medical textbooks on hypoplastic left heart syndrome and a nursing magazine.Anna Jaworski is not a nurse or a doctor. She is a mother who has made it her goal in life to help other families of children with CHDs. To do so, in addition to producing helpful resources through her publishing company Baby Hearts Press, she has also worked with Sue Dove (another "heart mom") to create two websites: www.babyheartspress.com and www.congenitalheartdefects.comFor Your Listening Pleasure all the radio shows available on The 'X' Zone Broadcast Network with our compliments, visit - https://www.spreaker.com/user/xzoneradiotv.Our radio shows archives and programming include: A Different Perspective with Kevin Randle; Alien Cosmic Expo Lecture Series; Alien Worlds Radio Show; America's Soul Doctor with Ken Unger; Back in Control Radio Show with Dr. David Hanscom, MD; Connecting with Coincidence with Dr. Bernard Beitman, MD; Dick Tracy; Dimension X; Exploring Tomorrow Radio Show; Flash Gordon; Imagine More Success Radio Show with Syndee Hendricks and Thomas Hydes; Jet Jungle Radio Show; Journey Into Space; Know the Name with Sharon Lynn Wyeth; Lux Radio Theatre - Classic Old Time Radio; Mission Evolution with Gwilda Wiyaka; Paranormal StakeOut with Larry Lawson; Ray Bradbury - Tales Of The Bizarre; Sci Fi Radio Show; Seek Reality with Roberta Grimes; Space Patrol; Stairway to Heaven with Gwilda Wiyaka; The 'X' Zone Radio Show with Rob McConnell; Two Good To Be True with Justina Marsh and Peter Marsh; and many other!That's The ‘X' Zone Broadcast Network Shows and Archives - https://www.spreaker.com/user/xzoneradiotv

This podcast is the second part of a three-part series on single-ventricle physiology and focuses on hypoplastic left heart syndrome (HLHS). In this episode, the listener will learn the definition and pathophysiology of HLHS, its presentation, diagnostic modalities, and initial management recommendations. This episode was created by Dr. Sabine Lague, a first-year pediatrics resident at the University of British Columbia, in conjunction with Dr. Shreya Moodley, a pediatric cardiologist at BC Children's Hospital.

What lessons can we learn from our adult Heart Warriors?Why might a Heart Mom write a book about her life experiences dealing with CHD? How does a Heart Mom take her personal experiences to fight for others in the hospital?Jenny Muscatell is a licensed social worker, blogger, author, photographer, and podcaster. She earned her Bachelor’s in Mental Health and Human Services through the University of Maine. She has over two decades of experience in the social services field, specializing in crisis intervention, health systems, and end-of-life care. Deeply passionate about her work, Jenny is regarded as a fierce advocate, earning her the Child Welfare Rising to the Challenge Award. Jenny lives with her husband Dan, and two daughters. Her first daughter Faith was born with Hypoplastic Left Heart Syndrome. Jenny shared her life experiences, authoring the Amazon Best Selling book, “The Journey of Faith and an Open Heart” and as a public speaker on multiple platforms. Through faith-filled presentations, heartfelt written words, and photography, Jenny’s mission is to give voice to the vulnerable, hope to the hurting, and to make way for the unspoken to be told.Link mentioned in this podcast:Jenny's websiteAnna's Buzzsprout Affiliate Link (if you'd like to try Buzzsprout for your podcast and get a bonus gift card -- and Anna will, too!)Links to 'Heart to Heart with Anna' Social Media and Podcast Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsiteSupport the show (https://www.patreon.com/HearttoHeart)

In this episode we interview heart momma, Kerri Beth Tanksley. She discusses her daughter, Jules' CHD, which is Hypoplastic Left Heart Syndrome. Jules' is a two and a half year old pageant queen whose platform is CHD awareness.  Kerri Beth Talks to us about why she chooses to raise awareness for CHD.

This Valentine's week episode is all about love and heart. We are honoring Congenital Heart Defects Awareness Week and American Heart Month with a special episode featuring my dear friend Lauren Tonge. Lauren is the mother of a sweet boy named, Riley, who was born with Hypoplastic Left Heart Syndrome (born with half of a heart). Lauren shares about her discovery of this syndrome during pregnancy, the planning needed to arrange life saving cardiac surgeries, and the realities of raising a child with a congenital heart defect, especially amidst a pandemic. What we're talking about... Hypoplastic Left Heart Syndrome and Congenital Heart Defects Raising a child with medical complexities Healing through PTSD and Anxiety The importance of human kindness Ways to cope through parenting a child with medical complexities LINKS MENTIONED: One World Empowered 28 Day Energetic Reset ->ClickHere

Episode 75: Hypoplastic Left Heart Syndrome With Guests Dr. Thomas Glenn and Tawanna Nishibayashi In this episode, we discuss hypoplastic left heart syndrome. Dr. Thomas Glenn discussed that the condition is a congenital heart disease where the left side of the heart is underdeveloped. Nowadays, a diagnosis is done prenatally, but once kids are born, the diagnosis is confirmed via an echocardiogram. Doctors also test the saturation around the baby’s body before they go home to make sure the baby is ok. If the condition is not diagnosed prenatally, visible symptoms might include blue color to the child, changing breathing pattern, fast breathing, the child having a difficult time breathing, perfusion being different, mottling of extremities, and the child not feeding initially. This is a condition that can only be treated at 10-15 centers around the country, successfully, so it important to catch this condition early. The main treatments are surgery, transplant, or palliative care. The three main surgeries include the Norwood, Glenn, and Fontan. The goal of these surgeries is to get the right side of the heart to do what the left side would have done and then to redirect the blood from the heart to the lungs. During the early periods, these kids are followed every week and have echocardiograms at least once a week. Medications are always needed. Parents need to be careful about the exposure the children have to other people during the interstage phase. Dr. Glenn shared his personal experienced with Hypoplastic left heart syndrome. Tawanna Nishibayashi’s daughter Avery was also born with that condition. Tawanna shares Avery’s story. Avery had a complex case, fraught with complications, including needing a Berlin heart and a heart transplant with rejection, and injury to other bodily organs.     Some possible complications of the condition and surgery include involvement of the liver, kidney, and needing NG tubes for feeding. There is a possible need for a heart and liver transplant in adulthood. A lot of patients have to deal with PTSD, anxiety, and depression. These children may not grow as fast as their peers and may experience developmental delays. Factors contributing to this is frequent anesthesia, lower saturations, abnormal brain development in utero, and spending a lot of time in the hospital. Tawanna recommends that once you have found out that your child has this condition, take time to process. Begin the morning process early (of a normal pregnancy, baby shower) and the death of normalcy. Process the length of time your child might be in the hospital. Learn the science as much as you can, including treatments, outcomes, mortality, conditions, centers, procedures, surgeons, care teams, follow up, and support. Be an advocate for your child. Develop a relationship with your team. Expect the unexpected and prepare for that as much as you can. Quality of life is also an issue for children, including ICU psychosis, aspiration, feeding troubles, nausea, and trust issues. Moreover, parents often experience PTSD and CPTSD. To prepare the children for medical appointments, cluster care, read books with them about the procedure, watch shows about doctors and shots, have the child hold the stethoscope, get their permission, let them know what to expect, bring their favorite things, and maintain a routine. Be prepared for financial difficulty. Often, one parent is no longer able to work due to helping their child. Sometimes, neither parent can work, in order to care for the child. Treatments, procedures, medical equipment, medications, anything insurance doesn’t cover, outside therapies, hospital stays, home health nurses, parking, food, laundry, and groceries all factor into financial difficulties. For advocacy, use your voice. Ask a lot of questions. Attend all the rounds. Spend a lot of time with your child. Have someone with your child as often as you can. Keep in touch with your support team, even while you are outpatient. Being a medical mom can be very challenging, as it is intensive, time consuming, people might not understand, and you have less time for fun things. Expect the unexpected. Roll with the punches. Other coping strategies include hospital relationships, carving out your own quiet time, having a routine, learning to ask what you need, taking time outside of the hospital and get fresh air, yoga, and music therapy. Links: Dr. Glenn: Glenntm3@gmail.com LinkedIn Tawanna:  Tawanna.nishi@icloud.com Website Instagram LinkedIn      Hypoplastic Left Heart Symptoms Facebook group Heart Camp- Camp Delcorazon Children’s Heart Foundation ParentWise   Email us if you have any questions or ideas! We are now on instagram! Check out updates on our website. Follow Thriving on Twitter. Check us out on Facebook! We are also on Pinterest!     Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Show Music: Intro Outro: Intro Outro 2 by Mattias Lahoud under CC-BY 3.0 License (www.freesound.org) Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License (www.freesound.org) Self Care Song: Green and Orange No Water by Duncan Alex under CC-BY 3.0 License (www.freesound.org)   Hosted by: Jessica Temple    Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple

What happens when someone is born with only half of a working heart?  Remarkably, this is what happens in babies born with a rare congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Physician/scientist Dr. Paul Grossfeld studies HLHS at his laboratory at the University of California San Diego, and his team has made some amazing, paradigm-shifting discoveries.  As you'll hear, these breakthroughs may very well lead to changes in the way this disease is treated, and potentially, eventually help prevent it altogether.  Full of beautiful personal stories and fascinating science, this episode of One Rare Heart will engage and illuminate.

Hypoplastic left heart syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As a baby develops during pregnancy, the left side of the heart does not form correctly. Ava Weitl, now a first grader, was born with HLHS. She had her first heart surgery the day she was born. Now she is part of pioneering research at Mayo Clinic. On this episode of Mayo Clinic Q&A, Ava and Dr. Timothy Nelson, director of the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome at Mayo Clinic, will share her story.

Dr. Richard Ohye is the Head of Pediatric Cardiovascular Surgery, Associate Chair of Cardiac Surgery, and the co-Director of the Congenital Heart Center at the University of Michigan C.S. Mott Children's Hospital. He received his undergraduate degree from the University of Pennsylvania. He received his MD, completed his general surgery residency, and his cardiothoracic surgery fellowship at Ohio State. He completed his pediatric cardiovascular fellowship at the University of Michigan. He is the Co-Founder of the Michigan Congenital Heart Outcomes Research and Discovery program. Tune in for our discussion on hypoplastic left heart syndrome: how it's diagnosed, treated, and much more.

On the Mayo Clinic Radio program, Dr. Grant Hamilton, division chair of Facial and Plastic Reconstructive Surgery in the Department of Otorhinolaryngology at the Mayo Clinic, discusses common cosmetic surgical procedures including rhinoplasty to change the shape of the nose, face-lift (rhytidectomy), and eyelid surgery (blepharoplasty). Also on the program, Dr. Kejal Kantarci, a Mayo Clinic neuroradiologist, will discuss menopause, hormones and dementia. And Ava Weitl, a first grader who was born with hypoplastic left heart syndrome, and Dr. Timothy Nelson, director of the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome at Mayo Clinic, will share Ava's story.

Join me and Erin Borkowski, President of Beats for Bella engage in an important conversation on community spirit. Beats for Bella is a nonprofit to create awareness for Congenital Heart Defects (CHDs). Erin’s daughter Bella, was born in 2013 with  a severe Congenital Heart Defect called Hypoplastic Left Heart Syndrome. Take a peak at what they do here: Beats for Bella.

Madelyn's parents found out of her diagnosis before she was even born. After her 20 week ultrasound, Mom (Terra) and Dad (Matt) found out their unborn daughter would be born with a condition called Hypoplastic Left Heart Syndrome. About 30 minutes after Madelyn was born she was transferred to the Stollery and spent a week at the NICU. Madelyn has since gone two successful surgeries, with a third planned for later this year.

On today’s episode we go over Hypoplastic Left Heart Syndrome, a condition that our 10 year old daughter was diagnosed with before birth. We discuss how we have managed to get through the tough situation of having a child with severe medical needs, and continued to have a happy, healthy marriage. Specific topic discussed in this episode: Scott’s work trip. (0:30) Our daughter Ivy’s newest diagnosis. (1:45) Ivy’s medical issues amping up in the last year. (4:45) Why having a child with a medical condition is stressful on a marriage. (5:20) Ivy’s story of how she was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). (6:30) How we dealt with the news of her heart condition. (8:15) Ivy’s birth and immediately afterwards including her first open heart surgery. (9:30) Emergency heart surgery. (11:45) Slow progress of recovery, and other diagnoses. (13:10) Recovery at home after 2 heart surgeries and one intestinal surgery. (15:15) More heart surgeries and continuing to have children. (17:15) Ivy’s amazingness and why she is the best. (17:55) Fear of needles with Ivy and Scott. (20:30) Never having to raise our voice with this perfect child. (22:30) "Fun" facts of HLHS. How rare it is, why it occurs, treatment, continued risks, etc. (23:40) Rochelle being featured on another podcast (Heart 2 Heart with Anna, Episode - Congenital heart awareness at Podcast Movement 2019) to give a short synopsis of Ivy’s story. (28:00) More on how we got through and continue to get through everything. (30:30)

This week we talk with young Alex Homer and his mom about his heart transplant journey, Alex was born with Hypoplastic Left Heart Syndrome which left him with half a heart. Listen as we talk about the initial corrective surgeries and ultimately needing a transplant. We also get to hear how life is now and some advice they have for others facing these challenges.

Hear the amazing story of Meagan Houpt who reveals how she has lived with Hypoplastic Left Heart Syndrome since birth. This is truly an amazing story of strength and motivation that you don't want to miss. Meagan reveals her unique health journey and it is full of inspiring messages. Surgeries and doctor's don't slow Meagan down from helping others with this terrible disease. Don't miss the Revealing Healing of Meagan Houpt!

It's time for an in- depth conversation about Men and Grief, how they grieve differently than women, and so much more! Grief and Rebirth podcast is honored to have Ron Glenn Kelly open this door to enlightening new insights for us. Ron, who has honorably served as a Military policeman in the United States Marine Corps, as a sworn police officer, a Federal Agent and as a business executive, lost his precious 16 - year old son and only child to Hypoplastic Left Heart Syndrome in 2013. What's a man in tremendous grief, who's been taught to control his emotions, to do? --- Support this podcast: https://anchor.fm/griefandrebirth/support

It’s time for an in- depth conversation about Men and Grief, how they grieve differently than women, and so much more! Grief and Rebirth podcast is honored to have Ron Glenn Kelly open this door to enlightening new insights for us. Ron, who has honorably served as a Military policeman in the United States Marine Corps, as a sworn police officer, a Federal Agent and as a business executive, lost his precious 16 - year old son and only child to Hypoplastic Left Heart Syndrome in 2013. What’s a man in tremendous grief, who’s been taught to control his emotions, to do? --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/griefandrebirth/support

It’s a moment that many parents on this podcast have talked about. Your at your ultrasound, pregnant with your child, and all of a sudden the mood of the room changes. Either the technician leaves, or a doctor walks in to “take a closer look” … a million questions and thoughts and fears run through your mind. In today’s episode, you will get to hear from Jade Marie from Portsmouth England. At 16 years old and after being told she could never have children, Jade Marie was shocked to learn that she was 16 weeks pregnant. At at an emergency ultrasound less than 24 hours later, she learned that the baby inside of her had one of the most severe heart defects - she was missing the entire left side of heart.  In this epsidoe, we will hear Jade Marie describe what the journey with her daughter, Dawn Louise, has been like and what it is like to have a child with hypoplastic left heart syndrome. Instagram: @DawnLouise_HLHS Facebook: Dawn-Louise HLHS Blog YouTube: Archer Adventures UK HLHS Support: Little Heart Families Listen to and read about more stories from parents of children with an illness or medical condition here: Child Life On Call | Instagram | Facebook | Twitter

Tia Levings (@TSLevings) is a writer based in Jacksonville, Florida, currently with several exciting projects in the pipeline. In this episode, Tia and Rebecca discuss everything from motherhood to fictionalizing memoirs. This was a great conversation with surprising twists and turns...we hope you enjoy the unexpected journey! The conversation starts off with sharing birth stories, which provide an important look into Tia's backstory, before turning to talk more about her second love, writing, including topics such as pulp writing, deep work and writing coaches. They finish up with some talk about HitRecord, where they have worked on some comedy projects together, and a story about a kitchen sink. Rebecca and Tia realize they have more in common than they even knew. Visit Tia's Website: www.tialevings.com Books We Mentioned: Not Nosy may earn a commission for purchases made through the following links: Deep Work by Cal Newport Girl Wash Your Face by Rachel Hollis Love Warrior: A Memoir by Glennon Doyle HitRecord Mentions: Human Cheese sketch, The Encyclopydia of Lydia: “Your First Time”, PodPast comedy podcast @notnosypodcast on Social Media: Instagram Twitter Facebook YouTube

This episode features returning Guests Amy and Jessica Cowin. Amy Cowin was featured in Season 11 of "Heart to Heart with Anna" in the Heart Warrior Siblings series. She is a heart-healthy sister. Jessica Cowin is Amy's older sister who was born with hypoplastic left heart syndrome and was featured in Episode 3 of Season 1 of "Heart to Heart with Anna." Jessica has had both a heart and kidney transplant. In this program, Jessica and Amy will talk about Jessica's early health issues, her transplants, what they are doing now to help medical science and how their experiences are helping them now to cope with their mother's recent health issues.Support the show (https://www.patreon.com/HearttoHeart)

Christiana Whallon's daughter, Jaylee, was listed for a heart transplant due to being born with hypoplastic left heart syndrome and going into congestive heart failure. In this episode, Christiana shares with Anna what it was like watching her daughter's health decline to the point where she had to be listed for a heart, what preparing for the transplant process was like for her family, and how she has survived even though her daughter never received a heart transplant.Support the show (https://www.patreon.com/HearttoHeart)

Today's program is one in a pair of programs to be presented during this Spotlight Series which features Heart Defects Around the Globe. Today's program is in English and next week's program will feature Guest Host, Marta Montero and Guest, Jennifer Iguina in Spanish. Today's program features Jennifer Iguina and Host, Anna Jaworski. This program focuses on how Jennifer discovered her son would be born with hypoplastic left heart syndrome, how she came to choose the treatment option she did and how she and her entire family became advocates for the congenital heart defect community. Jennifer also shares how others can be advocates and help to educate the world about congenital heart defects as they start a journey to find their voices.Support the show (https://www.patreon.com/HearttoHeart)

Daniel Sadjak shares with Anna what it was like to grow up in a family with heart-healthy siblings and one sibling born with hypoplastic left heart syndrome (HLHS). He talks about his earliest memories, what it was like going to school with his brother and how his relationship with his brother has changed over time. Now that both brothers are adult-aged, the brothers have a more mature relationship. Tune in to hear how parenthood has affected Daniel's perspective on his parents and how they raised him and his siblings.Support the show (https://www.patreon.com/HearttoHeart)

Sisters Amy and Jessica Cowin share a special secret. They have both been touched by organ donation and transplantation. Jessica was born with hypoplastic left heart syndrome or HLHS and needed a heart transplant. As if that wasn't stressful enough, Jessica learned that her kidneys were failing and if she didn't get a transplant, she would have to go on dialysis. Leave it to younger sister, Amy, to come to the rescue! Tune in to hear Amy talk about what it was like for her to see her sister go through a heart transplant only to realize that without a kidney, she very well could die. Support the show (https://www.patreon.com/HearttoHeart)

In today's episode, big brother Joey Jaworski, talks about what it was like growing up with a brother with hypoplastic left heart syndrome or HLHS. He shares some of his earliest memories with Anna (who also happens to be his mother), talks about ways he believes he helped his brother and ways that he believes parents can help their heart warriors and heart-healhy children. He discusses ways he stays close to his brother, the big change he made just recently because of his family and why he feels it's so important to be near his family. Joey Jaworski is 3 years older than his brother Alex who was born with HLHS. Both Joey and Alex are now in their 20s. Joey talks about what it was like for him to try to help his family when his little brother had 2 open-heart surgeries within the first year of his life and then another one when Alex was 17 and Joey was 20 years old. Support the show (https://www.patreon.com/HearttoHeart)

Dr. Carolyn Lam:               Welcome to Circulation on the Run, your weekly podcast summary and backstage pass to the journal and its editors. I'm Dr. Carolyn Lam, Associate Editor from the National Heart Center and Duke National University of Singapore.                                                 This week's journal is really special. It is the 2017 cardiovascular surgery-themed issue of "Circulation." To summarize this issue, I am so privileged to have the editors, Dr. Marc Ruel from University of Ottawa Heart Institute, as well as Dr. Timothy Gardner from Christiana Care Health System. Welcome gentleman. Dr. Timothy Gardner:     Hello. Dr. Marc Ruel:                   Hi, Carolyn. Glad to be here. Dr. Carolyn Lam:               Thank you for another beautiful themed issue, Marc. I see that there are four general themes within this theme, if I may. The first of which are a collection of papers on coronary disease and coronary surgery. Could you maybe start by giving us an overview of that? Dr. Marc Ruel:                   One of the main topics that have been looked at in the surgical-themed issue this year is coronary surgery. We all know well that 2016, 2017, the academic year was quite fertile in providing new information around coronary surgery, especially with the release of the ART trial had actually scientific sessions of the American Heart Association the last November with simultaneous publication.                                                 Interestingly, the cardiovascular surgical-themed issue has several coronary papers and one that deals with essentially with graft failure, if you will. There's an in-depth review written by Mario Gaudino, who is well known and does fantastic work at Cornell, who essentially put a team together looking at several aspects of coronary graft failure. I guess we can say that these are looked in quite great depth, and they deal with several aspects of what would lead to a coronary bypass graft to fail.                                                 First and foremost, Mario and the team look at the blood components. Then the artery and the native bed itself. Then they focus a lot on the conduit, not only the nature of the conduit being a venous versus arterial conduit, but also the way of storing the conduit prior to performing the bypass. Also, the technique that's used around the use of that conduit.                                                 Finally, I'd say that the review culminates with the patient bioreactor, for lack of a better term, aspect. Endothelial dysfunction in the patient with diabetes, age, gender, hypertension, dyslipidemia, etc., all these things that do act as a significant substrate for the fate of the conduit vessel.                                                 A very unique, I think, first-time, in-depth review that, certainly, the "Circulation" editorial team and reviewers were very excited about. I think this will be quite impactful and provide very, very detailed information for future research and future improvement and fate of the coronary graft conduits. Dr. Carolyn Lam:               And, Dude, I agree. It's the new look at perhaps a classic, old, central surgery, the cardiovascular surgery. Very nice, indeed. Dr. Marc Ruel:                   Precisely, thank you. We also have a couple of important, seminal original papers within the realm of coronary surgery. In fact, these also deal, to some extent, with the fate of conduits and certainly how they work in the patient population in long ago bypass surgery.                                                 One is a randomized control trial, a single center randomized control trial that was performed in South Manchester. It's called the VICO trial, a study comparing vein integrity and clinical outcomes. Essentially, the study looked at open vein harvesting versus two types of endoscopic vein harvesting for coronary artery bypass grafting.                                                 The study was performed at a single center in England with three sound methods, having three groups of 100 patients who were compared with regards to the vein harvest technique. The primary outcome was with regards to actual vein integrity, looking at muscular damage and endothelial function and integrity on microscopy.                                                 Surprisingly and actually quite reassuredly that there were very few differences between endoscopic vein harvest and open vein harvest. Certainly the investigators also looked, as one of their secondary outcomes, at quality of life. It was quality of life that was gained in patients who had endoscopic vein harvest versus those who had open vein harvest.                                                 Overall, there was no difference in major adverse cardiac events. Therefore, showing at least in an internally valid fashion that these investigators at their center could do endoscopic vein harvesting as well as open vein harvesting. Dr. Carolyn Lam:               I know that there are other original research papers, perhaps. Would you like to highlight any of them? Dr. Marc Ruel:                   Yes, for sure. Carolyn, there's also one more coronary surgery paper, which I wanted to highlight and that is the paper entitled, "Does Use of Bilateral Internal Mammary Artery Grafting Reduce Long-Term Risk of Repeat Coronary Revascularization?"                                                 This is a multi-center analysis with first author is Iribarne from Northern New England. Essentially, seven medical centers got together and took about 20 years of consecutive CABGs with a total number of 50,000 operations, or just shy of 50,000 operations.                                                 The median duration of follow-up was 13 years, and these patients were well matched together using a propensity matching scheme. I think this paper and this research is unique and of high impact. Even though it does have shortcomings of not being a randomized control trial, it is very welcome information, especially in light of the recent ART trial, which, as you know, did not show any difference at five years analysis between single and bilateral internal thoracic artery use.                                                 The particularity of the Iribarne paper is that it is a very large data set up with close to 50,000 patients. It is multi-centered, therefore, it is real life. It is a consecutive series. The patients are extremely well matched, and it is remarkable to hear that the patients, in fact, had no difference in mortality until about five years after the operation.                                                 As opposed to many previous series where single versus bilateral internal mammary grafting shows a mortality difference very early on, which always raises the suspicion of poor matching or confounding by indication, if you will, this paper did not have that.                                                 Finally, the follow-up was quite long and at about six years, there was really a mechanistic signal with regards to repeat revascularization events, which seemed to match the difference in late mortality. There was no difference in early and five-year mortality, but afterwards as repeat revascularization events started to occur more frequently in the single mammary group, this was matched by a difference in mortality, as well.                                                 I think a very useful, large, long follow-up mechanistically-based information that I think adds very significantly to the current information we have about bilateral versus single mammary use. Dr. Carolyn Lam:               Thank you, Marc. Two original papers, highlighted, dealing with really very important modern controversies in this area. Open vein versus endoscopic vein harvesting, single versus bilateral mammary artery bypass. Excellent.                                                 Let's move on now to the next sub-theme, if you will. And that is the collection of papers on "Adult Congenital Heart Conditions," really, really an increasingly important and growing population that we're seeing. Tim, would you like to summarize maybe some of the highlights of the papers there? Dr. Timothy Gardner:     The first paper, as you point out, is focused on adult patients with repaired tetralogy of Fallot. This series came from the UK and it examines the course of almost 60 patients, at a mean age of 35 years following a repair of tetralogy as infants or young children, developed right heart failure and required pulmonary valve replacement.                                                 This is a common scenario that we're seeing, successfully repaired children who appear to do well but as they get into their late 20s and 30s, their pulmonary valve function, which is often inadequate or not even present valve, require an intervention.                                                 The important learning here is that pulmonary valve replacement, either surgically or by catheter technique, was shown to be highly effective in salvaging right ventricular function. That is based on imaging studies as well as hemodynamic studies of right ventricular function. There was an almost, in this group of patients, almost an immediate reverse remodeling of the right ventricle after placement of the valve, that continued to improve over time.                                                 This was, I think, quite reassuring. There, historically, was a bit of a reluctance to operate on these patients as their right heart was failing, despite the fact that without some intervention to take the volume load off of the RV, the patients didn't do well. This is good news for an important group of patients who we are all seeing, who oftentimes present to the adult cardiologist because of this right ventricular failure problem. A nice, reassuring study.                                                 Actually, the other two congenital papers are, again, focused on the infant. They both deal with the infant with hypoplastic left heart syndrome or single ventricle pathology. The first paper seems sort of specialized in terms of its focus, "The Optimal Timing of Stage-2-Palliation for Hypoplastic Left Heart Syndrome." This was a report from the NIH Pediatric Heart Network. They had a single ventricle reconstruction trial.                                                 This network is comprised of about 10 North American centers, both in the U.S. and Canada and has provided excellent data about the management of pediatric heart disease but, in particular, the single ventricle trial has been excellent.                                                 In this particular paper, they look at the optimal timing for stage-2 repair. Just to remind ourselves, the first part of the three-stage treatment for hypoplastic left heart syndrome is the Norwood procedure, which has to be done shortly after birth, as the patent ductus arteriosus closes and converts, essentially, the single right ventricle into the systemic ventricle.                                                 The stage-2 comes along, usually done with a Glenn-type of shunt, increases pulmonary blood flow and stabilizes these infants until they can reach the age for, and the heart function for definitive repair. This has been a particularly difficult problem for the congenital heart surgeons. What is the optimal timing?                                                 This study, which involved over 400 patients, identified optimal timing for the second stage between three and six months after the Norwood. I think this was very reassuring, is reassuring or supportive for the congenital heart community in terms of both patients and also good evidence base that a delay of three to six months does, in fact, produce the best transplant-free survival.                                                 In fact, the other aspect of this observation was that infants who developed the need for another second stage operation sooner than that did not do well, and the reasons for the required earlier surgery could be failure of the initial operation or additional anatomic risk factors. But this, I think, was an important, large series, multi-center study that will prove to be very helpful in sorting out this complex timing of a three-stage repair.                                                 Just to comment, again, for readers who don't deal with infant congenital heart treatments very often, there's been a remarkable amount of success over the last two decades in salvaging and saving these very difficult infants with the hypoplastic left heart syndrome. In fact, an additional paper in this surgery-themed issue, comes from the UK and is, in fact, a report on the findings from the UK-wide audit of the treatment of infants with hypoplastic left heart syndrome.                                                 In fact, their findings, in this sort of real world, not in the Pediatric Heart Network trial group, is very similar. They found that infants who got to the second stage without additional refinement of the initial Norwood procedure and were able to be successfully treated with a Glenn shunt somewhere in the four-to-six-month age range, did well. They actually made the point that the anatomy was more of a determinant than anything else.                                                 I think that this particular review will reinforce what the congenital heart surgeons have learned about optimal timing for this three-stage treatment of what previously were unreconstructable children. Dr. Carolyn Lam:               Thank you so much, Tim. Isn't it wonderful the way papers come in and they're actually complementary and consistent with one another. We're just so lucky to be publishing all of these great, high-quality, impactful papers in "Circulation."                                                 Moving on, the next paper actually reminds us why this is a cardiovascular surgery-themed issue and not just a cardiac surgery-themed issue. Didn't we just say that earlier, Marc? This one is on abdominal aortic aneurysm treatment. A population-based landscape of this. Could you tell us a little bit more about that one? Dr. Marc Ruel:                   Absolutely. Carolyn, you're entirely right. We must remember that "Circulation" is also about peripheral vascular disease, saying this earlier, or cardiovascular surgery and anesthesia consult also when it encompasses vascular surgery. Precisely to that effect, one of the papers in our cardiovascular surgical-themed issue is a landscape population based analysis from Finland that looks at the incidence of abdominal aortic aneurysm between the years of 2000 and 2014.                                                 Finland has a population of about 5.5 million and remarkably has a very circumscribed healthcare system. They do not have an organized system of AAA care as some other countries have shown to have and potentially benefit from, but rather they have a treatment of this condition at several institutions, many of which may not be high volume.                                                 I think the paper is remarkable is that it is very well nested in terms of a population. It provides a comprehensive landscape of where this condition has evolved to over the last few years. Obviously, we see in the results from the authors that the mortality has decreased quite a bit, but also the incidence, probably as a result of better control of risk factors. And also the incidence of rupture outside the hospital.                                                 One thing that came out of this paper, as well, is a potential cohort of the benefits gained from developing an organized system of AAA care, from the reason that the mortality of AAA rupture in Finland was still quite high, despite this being a modern series. In fact, when you include ruptures, before arrival to hospital and at arrival to hospital, the overall mortality was almost 80% for ruptured AAA.                                                 Perhaps one message that comes out of this is that there may be a benefit in having specialized centers dealing with these conditions, especially as they are in the process of rupturing. One last observation was, obviously, the increasingly prevailing role of endoscopic vascular repair in the treatment of this condition, which, in fact, has now surpassed open repair as the dominant method of elective repair.                                                 I think, overall, a very comprehensive, well-nested, country-wide with good follow-up landscape of the AAA condition in a country that has essentially a similar socioeconomic status to much of the western world. Therefore, with external generalized ability to some extent. Dr. Carolyn Lam:               Exactly, and contemporary data. I really enjoyed that you paired those with an excellent editorial, as well. Finally, before we wrap this up, I have to ask Tim to comment on this next paper, and it's on ventricular assist device malfunctions, I love the title, "It's More Than Just The Pump." Of course, as a heart failure physician, this one's very close to my heart. Forgive the pun. But, Tim, could you tell us about that? Dr. Timothy Gardner:     This paper comes from the University of Pittsburgh and their artificial heart program. Robert Kormos is the first author and he's been one of the stalwart leaders in the use of LVADs and other pump devices. He reports on their experience with over 200 both HeartMate and HeartWare ventricular assist devices.                                                 It was interesting when we reviewed this paper by the editors, there was some thought that maybe this was a little too engineering focused and so on, but I think the point of the paper is that, as they say in the very first line in their report, reports of LVAD malfunction had focused on pump thrombosis.                                                 But they point out very appropriately that, in fact, controller failure, battery failure, cable failure and other causes of device failure, which can be critical and life threatening and so on, are engineering issues. It reminds us that when we're managing this difficult group of patients, and we're seeing many more patients today with getting LVADs than 10 or 20 years ago, we need to have the bioengineering abilities and resources available.                                                 Even the surgeon and the critical care physician who is dealing with these patients either has to acquire this kind of knowledge or capacity himself or herself, or needs to have a good bioengineer nearby.                                                 What's interesting, I think, that all of us define that these mechanical failures were more common in this pretty big experience than what we've more clinically worried about, which was thrombosis of the pump. Dr. Carolyn Lam:               Exactly. That's so wonderful. And you know it just leads me to really thank you both, Marc and Tim, for this extraordinarily excellent selection of original research, state-of-the-art and perspective articles and editorials on congenital, coronary, vascular and heart failure surgery. This really appeals not just to the cardiovascular surgeons but really to the vast readership of "Circulation."                                                 Thank you for a wonderful themed issue and thank you for this great podcast. Dr. Timothy Gardner:     Well, thank you. Dr. Marc Ruel:                   Thank you very much, Carolyn. Dr. Carolyn Lam:               Listeners, don't forget to tune in again next week.

What happens when our Heart Warriors age out of high school but are not ready for college or trade school? What can parents do to prepare their children for adulthood when cognitively they may not be where their peers are? Join us today as Kathy Keller shares her experiences and advice with us! Kathy's Heart Warrior, Garrett, was born with hypoplastic left heart syndrome and has had strokes, plastic bronchitis a heart transplant and has benefitted from many special programs that are enabling him to have a quality life as an adult. Tune in to hear about challenges Garrett has faced, how his entire family has come together to help him lead a quality of life and preparations Kathy has made to ensure Garrett will be taken care of far into the future.Support the show (https://www.patreon.com/HearttoHeart)

Military families lead a very different life than civilian families do. Military families come from all walks of life and, when their children are diagnosed with heart defects, the challenges can vary according to location, branch of service, and of course separations that come at the most unexpected times. Despite these challenges, military families try their best to find ways to balance all aspects of their lives with a positive attitude. When a child is born to a military family and that child has birth defects, the one thing most families want is comfort -- and oftentimes comfort is found in what is familiar but many of our military families are not afforded that luxury. How do military families deal with having a child with a heart defect? What special challenges do they face? Who can help them through the difficulties associated with having a child who needs surgery in the first days or months of a baby's life and will require lifelong care? Our Guests today are military wives, Andrea Quirk and Chelle McIntyre-Brewer. They explain to us what is involved in the lives of our military families dealing with congenital heart defects.Support the show (https://www.patreon.com/HearttoHeart)

Tara shares her story about her daughter who has hypoplastic left heart syndrome. She talks about her pregnancy, when her she first learned that her daughter was going to have congenital heart disease, and the moments leading up to her daughter's birth. She discusses her stress level during her daughter's first heart surgery, and about her daughter's hospital stay after the surgery. Tara also talks about the time at home in between the two heart surgeries. Tara also shares how she was able to receive additional medical services and support once her daughter was discharged from the hospital. She talks about the Glenn surgery and her daughter's recovery and hospital stay related to it. Tara talks about how their daughter has brought her and her husband closer together and strengthened their marriage. Finally, she offers advice and resources to parents who may be going through a similar situation. Join us as Tara shares her story.

What is your artistic motivation? Has it always been the same, or has it changed? Artist Scott Conary would say that it has changed over the years. He describes a time when his artwork and his career came from a different place of motivation, that was before his daughter was born. Once she came into the world, Scott’s life, including his artwork took a new direction. In our conversation, Scott shares about his struggle with perfectionism, why every question doesn’t need an answer, the health difficulties that his daughter has faced from birth, and so much more. The illusion of perfectionism As a creative individual, you want your art to resemble the vision you have for it in your mind as much as possible. This can be both frustrating and exciting. When it comes together just right and looks exactly how you envisioned it - satisfying. On the rare occasion that it exceeds your expectations and imagination - ecstasy. My guest Scott Conary and I spent some time in our conversation around the subject of perfectionism. Scott explained how much the illusion of getting everything just right can derail the creative process. Scott will be the first to tell you that most of his artwork can’t be described as perfect. But because of the lessons he has learned, he would call them complete. Every question doesn’t have an answer Do you ever have a hard time silencing the noise in your head? Does your mind race with what feels like hundreds of questions or ideas? What do you do with those thoughts? My guest, Scott Conary spoke with me about this struggle. He told me about his battle to fight through all that noise and focus on what really matters. We both arrived at a consensus that not all questions need to be answered. You don’t have to follow every thought or idea down the rabbit hole. As difficult as it can be to resist that urge, it can be very freeing to just say “No” and bring your focus back to a singular goal or objective. When you are able to find this type of clarity, your artwork will benefit. The experience that colored everything Have you had a moment that changed the course of your life? Scott Conary’s daughter was born with “Hypoplastic Left Heart Syndrome.” He talked to me about her birth, and how that moment is the “Experience that colored everything.” As you can imagine, Scott and his wife had their world turned upside down with the diagnosis that came shortly after their daughter’s delivery. Scott was very gracious and transparent in our conversation. He shared about how the art he creates now holds a different meaning for him, it really shifted his artistic motivation. In what sounds like a contradiction, Scott says that his work has less significance but at the same time holds a new kind of meaning. The way Scott described it to me made perfect sense. As serious as his daughter’s condition is, Scott was quick to tell me how much joy she brings their family - at the time of this writing, she is seven years old and thriving. Art as an avenue for healing In light of the diagnosis that Scott and his wife received for their daughter, I wanted to ask Scott if creating art has contributed to healing on his journey. As you can imagine this was a difficult question to answer. Scott was gracious enough to give me an extended answer and discussion on this topic. Initially, Scott said that he didn’t necessarily see his creative pursuits as contributing to his healing process. However, the question resonated with Scott so much that he wanted to take another shot at answering it. On the second pass, Scott shared that he has experienced a sense of healing as he has taken his emotional trauma with him into the studio. Scott’s transparency and vulnerability were on full display and I was honored that he felt like he could trust me with such raw and honest responses. Outline of This Episode [0:35] My introduction to this episode. [2:40] How did Scott get started with his art career? [4:20] Scott talks about family and career struggles. [9:30] What Scott tells prospective art students and those starting their art career. [12:40] Scott’s “Why” [17:50] Is painting “Fun?” [28:10] What is Scott’s daily routine? [33:00] The illusion of perfectionism. [37:30] Do all questions need answers? [41:50] Scott’s current projects and obsessions. [49:20] Scott talks about continuing his artwork and [56:20] The story behind Scott’s daughter’s health difficulties. [1:02:00] Has art contributed to healing in Scott’s life? [1:05:30] Scott gives another answer to art’s healing in his life. Other artists mentioned on this episode Miles Davis Kurt Moyer Lucian Freud Rembrandt Diego Velazquez Daniel Sprick Quang Ho Alia El-Bermani Resources Mentioned on this episode Scott’s website: scottconary.com BOOK: Eat Pray Love Werner Herzog Connect With Antrese On Facebook On Pinterest On Instagram On Twitter

Dr. Timothy Nelson is the director of the Todd and Karen Wanek Family Program for HLHS at Mayo Clinic. Dr. Nelson and his team are specifically interested in the cause of hypoplastic left heart syndrome (HLHS) and finding ways to delay and prevent heart failure for individuals with HLHS. To better understand and treat this congenital heart disease, the program has taken a multifaceted approach that includes research into stem cells, genetics, imaging tools, and the creation of a biorepository. The program has launched clinical trials using autologous stem cells, also known as stem cells collected from an individual’s own body. In today's program, Dr. Nelson talks with Anna about the research that is being conducted at Mayo Clinic for both infants and adults. He talks about who can participate, how to find out more information and how people can contact his program for more information. Dr. Nelso also talks with Anna about where he believes the future of stem cell therapy and research is headed.Support the show (https://www.patreon.com/HearttoHeart)

Hypoplastic left heart syndrome (HLHS) is a critical congenital heart defect -- meaning that surgery within the first year of life is necessary to survive. Several decades ago, HLHS was uniformly fatal (except in some very rare cases) and most infants died within the first month of life. Since the 1980s there have been efforts made to save babies with HLHS. The results have been amazing. Now the success rate for babies born with HLHS is at an all-time high. What advancements have been made? What current treatments are most promising? What new treatments are on the horizon? Dr. Edward L. Bove is known throughout the world as "the man with the golden hands" because of his surgical skill working on babies with critical congenital heart defects. He joined the faculty at the University of Michigan as director of Pediatric Cardiovascular Surgery and became Head of the Section of Cardiac Surgery in 1999. He has given hundreds of presentations on heart surgery around the world. He has served on numerous committees including the American Heart Association, the Society of Thoracic Surgeons, the American Association for Thoracic Surgery, and the American Board of Thoracic Surgery. Dr. Bove serves on a number of editorial boards, has published over 300 manuscripts, dozens of book chapters, and edited two books. Dr. Bove is Anna's featured Guest today and he'll answer the questions posed above and much, much more! If you, or someone you love, has HLHS, you won't want to miss this program!Support the show (https://www.patreon.com/HearttoHeart)

TSRA Podcast: Congenital - Hypoplastic Left Heart Syndrome (Eric Feins & Pedro del Nido) by TSRA

Deena Barber has been a nurse for over 30 years. Over that time she has seen many changes in care for those born with congenital heart defects (CHDs). Tune in today to hear her discuss some of the most impactful advancements that have led to a change in the CHD population from being mostly comprised of babies to now having the greater percentage of the population being adult survivors. In Part 2 we'll be discussing the changes that have occurred regarding specific heart defects, namely tetralogy of Fallot, transposition of the great arteries, valve problems, rhythm problems and hypoplastic left heart syndrome.Support the show (https://www.patreon.com/HearttoHeart)

Jennifer Gutman is the mother of a son born with hypoplastic left heart syndrome. In today's show Jennifer talks with Anna about finding out about her son's condition after having lost a sibling to the same condition 30 years earlier. She also shares her advice with other parents considering saving umbilical cord blood for future surgeries. She informs Anna how her son's pediatric cardiologist feels about this state-of-the-art procedure. Tune in today to hear Jennifer and Anna in this first episode of Season 9 of Heart to Heart with Anna. The theme for this season is Advancements in Congenital Heart Disease.Support the show (https://www.patreon.com/HearttoHeart)

Chris Perez is a Heart Dad from North Carolina. His son Nolan was born in 2012 with Hypoplastic Left Heart Syndrome. For almost 3 years he's written a blog called Half Heart. Whole Life: an HLHS Dad's blog, where he lays out the life of a Heart Dad with honesty and humor. On today's episode, Chris will be presenting an update to the well-known essay "Welcome to Holland." This essay has been read by many since it was written in 1987: today Chris will give it a fresh new spin!Support the show (https://www.patreon.com/HearttoHeart)

Is the stress of caring for a child with a serious medical condition wearing you down? Do you find yourself being snappy with others? Is negativity showing through? Tune in to hear Guest Host, Chris Perez (a.k.a. HLHS Dad) interview Daniel Miles, the Assistant Director of Spiritual Education at Carolinas Medical Center, as he shares his wisdom and advice with us.Support the show (https://www.patreon.com/HearttoHeart)

Due to the complexity of the surgeries needed to help people with complex congenital heart defects, it is not uncommon for some survivors to suffer some neurological insults resulting in cognitive delays or even permanent neurological damage. How do parents of children with heart defects and neurological problems cope? What can parents do as their children become adults but are not able to function as adults? What kind of considerations need to be made for these children? Kathy Keller is the mother of an adult transplant survivor who has suffered two strokes and has dealt with neurological issues for a good deal of his life. Tune in to hear how Kathy and her husband Dennis have coped with this situation, what interventions Garrett has undergone to try to undo some of the damage caused by the strokes and what Garrett's prognosis is for the future.Support the show (https://www.patreon.com/HearttoHeart)

Chris Perez is a Heart Dad from North Carolina. His son Nolan was born in 2012 with Hypoplastic Left Heart Syndrome. For almost 2 years he's written a blog called Half Heart. Whole Life: an HLHS Dad's blog, where he lays out the life of a Heart Dad with honesty and humor. On today's episode, Chris will be presenting an update to the well-known essay "Welcome to Holland." This essay has been read by many since it was written in 1987: today Chris will give it a fresh new spin!Support the show (https://www.patreon.com/HearttoHeart)

Pediatric Grand Rounds with Shashank Behere, MD

The June SCVA podcast highlights the key points for Infants with Hypoplastic Left Heart Syndrome, in a discussion with the two expert authors Drs. Twite and Ing. This fascinating interview covers management details, pathophysiology, and general considerations for surgical repair of these extremely complicated patients.   To view the article, click here.

Hypoplastic left heart syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As a baby develops during pregnancy, the left side of the heart does not form correctly. Ava Weitl, now a first grader, was born with HLHS. She had her first heart surgery the day she was born. Now she is part of pioneering research at Mayo Clinic. On this episode of Mayo Clinic Q&A, Ava and Dr. Timothy Nelson, director of the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome at Mayo Clinic, will share her story. Advertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy