Podcasts about hlhs

Send us a textA broken wrist serves as an unexpected metaphor for the heart warrior's journey in this illuminating conversation with fundraiser and podcaster Amy Earhart. When Anna's recent accident left her with a titanium plate and a new perspective on recovery, it highlighted the resilience that characterizes the CHD community—adapting when our bodies say "enough" and finding creative ways forward.Amy Erhart brings this resilience to life through her remarkable story. Born with hypoplastic left heart syndrome in 1983, she's channeled her experience into creating meaningful change. Her "Putt Around Kaleida" fundraiser transforms her small hometown into a mini-golf adventure where local businesses design elaborate putting greens—from a smoking firehouse to a church model that's been preserved for generations. What makes this event special goes beyond the $20,000 raised; it's the photos of local CHD children displayed at the town park, creating powerful moments of recognition for families still processing their diagnosis.The conversation shifts to Amy's podcast journey with "Diaries of a Heart Warrior," where she's published over 30 episodes—far surpassing the six-episode mark where most podcasters abandon their shows. Through these conversations, Amy found the connection she'd been missing: "I didn't know a lot of people with CHD until these last couple years. This is how I'm finally meeting people." These exchanges have brought validation that she's not alone in her complex feelings about life with a congenital heart defect.Perhaps most meaningful is Amy's approach to fundraising, focusing on direct support for families rather than solely research: heart camps for children, gas money for hospital trips, hotel accommodations during treatments. It's a philosophy born from understanding that while research is crucial, the day-to-day needs of families navigating CHD require immediate attention.Have you experienced the power of community support during health challenges? Listen now and discover how small towns and big hearts are creating meaningful change for CHD families everywhere.Amy Erhart's podcast, "Diaries of a Heart Warrior": https://www.buzzsprout.com/2268461Anna's CHD Connects Hearts link: https://chdconnectshearts.com/products-list?am_id=annajaworski3819Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

This week we review a study assessing the impact of bundle branch block (BBB) on exercise tolerance amongst the single ventricle Fontan patient cohort. Why would this be associated with worse outcomes for exercise? How should the cardiologist use this datum of BBB in a single ventricle patient to inform clinical decision making in this patient group? Why is cardiac resynchronization therapy so challenging in this patient group? Dr. Omar Meziab of The University of Arizona shares his deep insights this week. https://doi.org/10.1007/s00246-024-03500-1

This week we review a recent study assessing the rate of hematochezia seen in children following neonatal congenital heart surgery, predominantly for aortic obstruction such as in HLHS. How often is this sign observed in this patient group and what percentage of these patients have actual necrotizing enterocolitis (NEC)? Are there any modifiable risk factors for NEC? How can these data help clinicians separate out those with more benign forms of hematochezia from those with NEC and how might this improve care for this patient group? These are amongst the questions reviewed this week with the work's first author, University of Michigan Assistant Professor of Pediatrics, Dr. Courtney Strohacker. DOI: 10.1007/s00246-024-03485-xFor those interested in pediatric podcasts, please take a look at this list of the 'top 15' pediatric topic podcasts - we are #4 in pediatrics for 2025!https://podcast.feedspot.com/pediatric_podcasts/

Send us a textIn this engaging episode of Heart to Heart with Anna, we dive into the significant strides made in pediatric cardiology, focusing on hypoplastic left heart syndrome (HLHS) and the inspiring journey of dedicated professionals like Dr. Paul Grossfeld. This episode highlights the complex nature of congenital heart disease, exploring not just the technical advancements in surgical techniques and post-operative care, but also the emotional journeys faced by families. Dr. Grossfeld shares powerful stories from his practice, illustrating the deep connections formed between healthcare providers and patients.Listeners will learn about the critical role of early diagnostics and how modern medicine has transformed the fatality rates associated with HLHS. The episode discusses the collaborative efforts across medical disciplines, which lead to innovative treatment and significant improvements in patient outcomes. With a keen focus on the importance of research to address genetic and environmental influences on heart conditions, Dr. Grossfeld emphasizes the need for community support in fundraising and awareness initiatives.As the conversation shifts toward the importance of heart screenings for athletes, listeners will discover how these measures can prevent tragic outcomes and promote healthy practices among young sports enthusiasts. We encourage our audience to reflect on their understanding of pediatric heart health and to become advocates for research and support within the community. Join us in this eye-opening episode that aims not only to inform but to inspire action among listeners who share a commitment to the congenital heart disease community. Subscribe, share, and engage with us to help uplift and empower those affected by these conditions.Here are some helpful links mentioned in this episode:HeartWorks: https://www.webuildhearts.orgDr. Paul Grossfeld's charities: Light the Way: https://radyfoundation.org/get-involved/events/light-the-way/Miracle Makers: https://radyfoundation.org/ways-to-give/fundraise/miracle-makers/Hearts Unite the Globe (HUG): https://www.heartsunitetheglobe.comSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

This week we review a recent large scale, multicenter adult congenital heart study on outcomes of HLHS Fontan patients versus other single RV Fontan patients. How do the two groups compare in regards to thromboembolic risk, risk for arrhythmia or risk for death and heart transplantation? Why might there be differences between these single RV patient groups? How can these results inform management? We speak with Assistant Professor of Medicine and Pediatrics at The Icahn School of Medicine at  Mount Sinai, ACHD expert Dr. Kali Hopkins. doi: 10.1161/JAHA.124.034757. Epub 2024 Nov 27

This week we delve into the world of adult congenital heart disease to review the topic of liver disease in the Fontan patient and specifically, hepatocellular carcinoma (HCC). What is the prevalence of this disease in the Fontan single ventricle adult patient? How effective are scores like the MELD-XI or Fibrosis-4 Index at identification of HCC in the Fontan patient? How should the Fontan adult patient be surveilled for this form of cancer? What evidence is there that earlier identification of HCC is associated with better outcomes? What may prove to be the most important factor in protection of the liver in the Fontan patient? Dr. Yuli Kim, Director of the ACHD program at The University of Pennsylvania shares her deep insights this week into this important topic. DOI: 10.1093/eurheartj/ehad788

From there to here. When Kasie Marek's son received a heart transplant after a long and difficult medical road of treating his hypoplastic left heart syndrome (HLHS), she had no idea what lay on the other side of treatment. Listen as Kasie shares their honest journey and what she's learned in this season's final episode.  

This week we delve into the worlds of cardiac critical care and neurodevelopment when we review a recent report from the team at Children's Hospital of Philadelphia assessing an association between postoperative opioid exposure in infants following CHD surgery and neurodevelopmental outcomes. What might be the biological basis for an association between these 2 factors? How confident can we be that opioid exposure is the factor of importance when there are so many co-variates and variables? We speak with outcomes research expert and interventional cardiologist Dr. Michael O'Byrne about this important and thought-provoking recent work.DOI: 10.1016/j.jacc.2024.06.033

Can a story of loss become a beacon of hope for others navigating the difficult journey of bereavement? Join us as Sheri Turner and Desiree Vaught share their poignant personal experiences with congenital heart defects and the profound impact on their lives. Sheri opens up about the loss of her firstborn, Thomas, and the challenges of raising her surviving children amid grief, including the emotional turmoil of a miscarriage. Desiree reflects on her son Logan's brief yet meaningful life and the incredible strength she found in creating a support group for bereaved parents. Their stories highlight the resilience found in community and the healing power of shared experiences.Navigating the emotional complexities of parenting after trauma can be an arduous road. Sheri and Desiree share their reflections on the self-doubt that often accompanies difficult medical decisions for a child. They discuss how grace and patience are crucial in the grieving process and emphasize that each person's journey is uniquely their own. Together, they explore the peace that can be found in accepting past choices, despite the heartbreak. Their shared experiences remind us that compassion and understanding are vital as we make peace with our past and present decisions.After reconnecting online after more than two decades, Sheri and Desiree are now channeling their grief into a joint project: a book of essays dedicated to children lost to heart defects. This collaboration aims to break the silence surrounding grief, offering solace and connection through storytelling. Desiree shares how writing has been essential to her healing, while Sheri emphasizes the power of diverse narratives to validate others' feelings. Through this endeavor, they hope to provide a platform for parents to share their stories and find comfort in knowing they are not alone on their journey.Helpful Links:Baby Hearts Press: https://www.babyheartspress.comBecome a Spreaker Supporter: https://www.spreaker.com/podcast/bereaved-but-still-me--2108929/support

Send us a textHow do families navigate the uncharted waters of raising children with congenital heart disease (CHD)? Join us on a groundbreaking episode of Heart to Heart with Anna, where we host our very first live show with a studio audience! With guests like Amanda, Joey, Michael, Ayrton, Regina, Rachel, and Chris, you'll hear raw and honest conversations about everything from recent surgeries to the complexities of living with DiGeorge syndrome and HLHS. The live audience format brings an unscripted, spontaneous energy that's sure to engage and inspire.Ever wondered what it takes to grow a podcast network dedicated to CHD? We share our ambitious plans for the next five years, including launching podcasts in multiple languages such as Spanish, Urdu, and even an African language. You'll laugh along with us as we recount some of the humorous mishaps we've encountered—like losing an internet connection during a live show from a coffee shop! Our journey is a testament to the passion and community effort behind each episode, evolving from personal contacts to listener-generated suggestions.This episode also offers a deep dive into the emotional landscape of CHD families. Special guests Meg Didier and Annie Ulchek, HLHS survivors, discuss the unique challenges they face. We cover a range of sensitive topics such as the role of fathers, the experiences of career moms, and the emotional toll on siblings. Discover how CBD and THC are being used for anxiety and pain management, and meet a father who opens up about the scars left by navigating the challenge of raising a child with a CHD while also parenting two heart-healthy children. We cap off by emphasizing the importance of awareness initiatives like placing AEDs in schools and invite you, our listeners, to contribute your stories and feedback for future projects.Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

Need some hope? Season 8 delivers. Whether you're needing hope because your grandchild is in the NICU, you've suffered a loss, a difficult medical diagnosis, learning challenges or sibling discord - this season has something for you. Set fear aside and open wide the door to hope. We're ending our year with a powerful set of inspirational voices. Hope lives here!  

This week we delve into the world of the single ventricle when we speak with Dr. David Hoganson, Assistant Professor of Surgery at Harvard Medical School about a recent work he co-published with investigators from Boston Children's Hospital on computational fluid dynamic modeling in the planning of the Fontan operation. Single ventricle heterotaxy patients with interrupted IVC are at enhanced risk for the development of pulmonary AVM's due to flow maldistribution to the pulmonary arteries from the hepatic veins in a Fontan. Can a computational fluid dynamic model predict which operative approach would result in the most balanced hepatic venous flow distribution? Can this reduce the incidence of pulmonary AVM's? How well did the models predict the actual pulmonary flow measured after surgery on CMR? Who beyond the heterotaxy patient might benefit from this approach? Dr. Hoganson offers us a peek into the world of personalized surgery in this week's exciting episode.         DOI: 10.1016/j.jacadv.2024.101057

Send us a Text Message.Discover the remarkable resilience of Rachael Gott, our extraordinary guest born with hypoplastic left heart syndrome (HLHS). Despite her condition remaining uncorrected, Rachel has navigated a complex medical journey, including ten cardiac ablations and two device implants, all while avoiding open-heart surgeries. Rachael also faces Marfan syndrome, which adds another layer of complexity to her life. Join us as Rachael shares her inspiring story, highlighting her ability to overcome innumerable challenges and offering hope to others with congenital heart disease (CHD).Rachael's journey is one of incredible strength and persistence. She opens up about her experiences with multiple heart rhythm issues and the difficulties posed by various medications. As she discusses her forthcoming plans for an open-heart Maze procedure and potential heart and kidney transplants at the Cleveland Clinic, Rachael provides us with a unique glimpse into the emotional and physical toll of living with severe heart conditions. Her late diagnosis in her twenties brings a poignant perspective on the emotional reactions of her parents and how they coped with the news, underscoring the importance of a robust support system.From a seemingly normal childhood filled with sports, singing, and dancing, to the shocking discovery of her condition following severe chest pain, Rachael's story is a testament to the human spirit's endurance. The medical community's awe at Rachael's case highlights the rarity and complexity of congenital heart defects like HLHS. Rachael's experience underscores the importance of community support and the strength she's found in connecting with others facing similar challenges. Tune in to hear her express gratitude for these connections and learn how her journey may soon be shared in a book about resilience.Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!Support the Show.Anna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

This week we review a recent paper from last 2023 about outcomes of cardiac transplantation in the adult congenital heart patient (ACHD). Little has been written on this topic until this very robust and large scale report. How do single ventricle ACHD patients fair at transplant and how do they compare to non-ACHD heart transplant recipients? Why might 1 and 3 year outcomes not be a 'fair' method of assessing outcomes in this very high risk patient group? How do HLHS patient outcomes compare with other single ventricles? Are there better ways to measure risk in this patient group and how might the data in this work inform risk stratification and management of failing Fontan patients in whom transplantation is being considered? These are amongst the questions posed this week to the week's expert, Dr Daphne Hsu who is Professor of Pediatrics at the Albert Einstein College of Medicine at The Children's Hospital at Montefiore. https://doi.org/10.1016/j.jacc.2023.06.037For those interested in learning more about Dr. Hsu, take a listen to episode #166 from June, 2021:https://www.spreaker.com/episode/pediheart-podcast-166-a-conversation-with-professor-daphne-hsu--45144274

Send us a Text Message.Have you ever wondered how living with a congenital heart defect can shape one's life journey? This week, we're diving into the remarkable stories of heart warriors, those extraordinary individuals who navigate life with congenital heart defects. I'm Anna Jaworski, and in this episode, we explore the powerful metaphor of transformation, akin to a caterpillar becoming a butterfly, as we discuss my latest book, "Heart of a Heart Warrior Volume Three: Transformation." We start off with an evocative foreword by Paula M. Miller, who shares her moving journey of resilience and the life-changing support she found through the Adult Congenital Heart Association.Prepare to be moved by the creative spirit of the CHD community. My co-editor, Megan Tones, and I highlight the diverse artistic expressions, from vivid visual artworks to heartfelt poetry and fiction. You'll hear about the stunning ferret drawing by Julie Kerr and the poignant poems of Lisa Colvil and Becca Atherton. We honor not only the living artists but also those who have passed away, celebrating their enduring legacy through their art. Organizations like Hearts Unite the Globe play a pivotal role in supporting these heart warriors, amplifying their voices and their art.The episode also touches on the critical role of parental advocacy and support. I share my personal journey navigating life with a child born with hypoplastic left heart syndrome (HLHS), which led me to write books and help form the Milagros support group. Inspired by these experiences, I continue to work on new volumes that capture the resilience and spirit of heart warriors, with Megan by my side as co-editor. Join us as we celebrate these empowering stories, remind everyone that they are not alone, and look forward to connecting with our listeners next week.To get a copy of The Heart of a Heart Warrior: Volume 3 Transformation, visit the Baby Hearts Press website at: https://www.babyheartspress.comBecome a subscriber: https://www.buzzsprout.com/62761/supportWe appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!Support the Show.Anna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

Send us a Text Message.When Hope's first breaths were intertwined with the whispers of uncertainty, my world changed. As a heart mom, each Mother's Day is not just a celebration but a milestone, reflecting the grit and grace it takes to raise a child with a congenital heart defect. Join me, Anna Jaworski, in an episode where we explore the deep emotional landscapes of mothers like me. We'll traverse the highs of motherhood, the lows of fear, and the battles that come with CHD, all through the lens of Mother's Day. Discover how stories of resilience echo through our community, offering wisdom and celebrating the spirit of heart moms everywhere.This episode isn't just about my journey; it's a chorus of voices from the heart mom community, sharing their own powerful narratives. Together, we recognize the role of pediatric cardiologists and the medical community in bolstering our strength, and we honor the courage required to let our children forge their own paths. Hear from fellow heart moms as they speak candidly about their experiences—moments of profound loss and the critical importance of support systems. It's an ode to the unwavering courage of families facing CHD and a beacon of hope for those who will join our ranks. Celebrate Mother's Day with us, and feel the solidarity of heart moms united by love and resilience.Special thanks to Hollie Stephenson, Regina Lawrence, Sheri Turner, Eileen Pearlman, Victoria Baerg, and Kimberly Russell for sharing their experiences, memories and/or advice with us.Sites or shows mentioned in this episode: Hollie's show: https://www.buzzsprout.com/62761/14985018Baby Hearts Press: https://www.babyheartspress.com/Become a subscriber: https://www.buzzsprout.com/62761/supportWe appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!Support the Show.Anna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

Witnessing your child's bravery and resilience as they navigate a life-altering condition like hypoplastic left heart syndrome (HLHS) is both harrowing and inspiring. Hollie Stevenson joins Anna to share the profound story of her son Tom, who not only fought through the early challenges of HLHS but also the complex battle with protein-losing enteropathy (PLE) in his later years. Her vivid accounts from Tom's diagnosis in utero, through his surgeries, and onto his impressive transition into adulthood, working in politics, is nothing short of remarkable. Their journey underscores the unpredictable nature of congenital heart defects and the critical importance of vigilant medical care.Through Tom's story, we uncover the myriad of long-term treatments and daily hurdles that come with managing PLE. We discuss the innovative treatments at the Children's Hospital of Philadelphia (CHOP) that led to significant improvements in his health and share insights from another patient's experience where a medication for Crohn's disease offered unexpected relief. These narratives illuminate the evolving field of pediatric cardiology and the crucial balance of medication management, driving home the message that children with heart conditions can and should lead full, joyous lives.Parenting is an art—especially so when your child has a heart condition. Our conversation traverses the delicate art of letting go, allowing our children to taste independence and embrace life's experiences, from participating in sports to taking on careers. We explore the shift from advocacy to supporting our children's autonomy, the complexities of medication management into adulthood, and the emotional journey that comes with each milestone. Hollie and Anna share their personal challenges and triumphs, offering a heartfelt insight into what it means to parent through uncertainty with hope and courage. Join us for an episode that's not just about the struggles, but also the extraordinary victories that come with raising a child with a heart condition.Support the Show.Anna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

This week we delve into the world of interventional cardiology and the Fontan when we review a recent report from the Children's Hospital of Philadelphia on the use of the "MitraClip" for the treatment of AV valve regurgitation in the congenital heart patient. Who would be a good candidate for this novel approach? What are the steps in planning or consideration of this technique in a congenital heart patient? How durable is this form of repair? These are amongst the many questions reviewed this week with this week's senior author, Professor of Pediatrics at the Children's Hospital of Philadelphia, Dr. Matthew J. Gillespie. DOI: 10.1002/ccd.30935

This week we enter the world of the adult congenital heart patient when we discuss Fontan associated liver disease with an ACHD expert, Dr. Katia Bravo-Jaimes of the Mayo Clinic. In this episode we discuss the role of intrahepatic transcriptomics and how genetic analysis of liver biopsy tissue may provide new insights into the pathophysiology of this disease process. How can differential gene expression in the liver of Fontan patients help to explain why some patients have mild versus others severe fibrosis or even frank cirrhosis? Can these insights provide hope for improved surveillance or therapy for this problem? Dr. Bravo-Jaimes provides the answers this week. https://doi.org/10.1016/j.jacc.2023.12.005

This week we enter the world of the adult congenital heart patient when we discuss Fontan associated liver disease with an ACHD expert, Dr. Katia Bravo-Jaimes of the Mayo Clinic. In this episode we discuss the role of intrahepatic transcriptomics and how genetic analysis of liver biopsy tissue may provide new insights into the pathophysiology of this disease process. How can differential gene expression in the liver of Fontan patients help to explain why some patients have mild versus others severe fibrosis or even frank cirrhosis? Can these insights provide hope for improved surveillance or therapy for this problem? Dr. Bravo-Jaimes provides the answers this week. https://doi.org/10.1016/j.jacc.2023.12.005

When Megan Houpt made the heart-wrenching decision to pursue adoption over pregnancy due to her heart condition, it struck a chord with me as a heart mom. Together, we unfold her narrative in this episode, navigating the complexities of adoption with a CHD. From the intricate dance of home studies to the emotional synergy with a birth mother, we journey through Megan's path to motherhood. The adoption landscape can be arduous, yet it's traversed with hope and culminates in the joyous arrival of Hunter Hart, a name rich with significance. (https://www.facebook.com/HLHSMeaganHoupt)In the second segment of the podcast, we continue reading from The Heart of a Heart Warrior Volume One: Survival. This week, we complete Chapter 3: Being Active with CHD.The courage of those facing congenital heart defects takes center stage as we share stories of triumph and transformation. Hear how heart warriors like and Alicia Lynch and Megan Tones find ways to be active, despite having complex congenital heart defects.Megan takes us on an Egyptian odyssey that defies the ordinary. Imagine scaling Mount Sinai and wandering amidst ancient temples, all while balancing the intricacies of medical needs with the thrill of adventure. Her narrative captures the essence of wanderlust, peppered with humor and humanity, proving that even with health challenges, the zest for exploration knows no bounds. Alicia inspires us with her journal entries which lead us from a time of despair to a time of rejoicing.In Chapter 4: CHDs Around the GlobeAmy M. Le, Ellen Banoub, and Belen Blanton channel their battles into creating waves of change and offering a helping hand to others within the CHD community. Amy's pivot from a tech giant to a champion for indie writers, Ellen's leap from a CHD survivor to a beacon of support, and Belen's recounting of finding God's mission for her showcase the remarkable resilience and tenacity inherent in our human spirit.Join us, and let these tales of bravery, resilience, and the indomitable will to embrace life's adventures inspire you.February 2024 Baby Hearts Press announcementSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

Guest: Dr. Daniel Penny Chief, Pediatric Cardiology Professor and Chief of Pediatric Cardiology, Baylor College of Medicine Co-Director, Texas Children's Heart Center Professor and Chief of Pediatric Cardiology, Baylor College of Medicine   In this episode: List at least one reason why neonates are more susceptible to congenital heart defects. Name two advancements in pediatric cardiac care in the last decade. Explain the most common symptoms of two of the three heart conditions: PDA, VSD or HLHS. This episode is eligible for CEUs. Visit https://handtohold.org/resources/podcasts/nicu-heroes/ to complete the questionnaire. It is the sole responsibility of the individual to verify if this credit is valid and eligible for use in your State and/or for your discipline for licensure or certification renewal.  

This week we review a recent report from the team at Boston Children's Hospital on outcomes of patients following Stage I palliation for HLHS. When patients are not doing well following this surgery, how important is it to identify surgical problems early in these patients? What are the most common problems encountered when a problem is observed? When a reintervention is performed in this setting, how do patients fare overall and is the timing of the reintervention a factor in overall outcome? Cardiac surgeon and Assistant Professor of Pediatrics at Harvard University, Dr. Meena Nathan shares her insights this week. doi: 10.1016/j.jtcvs.2022.04.033

This week we review the results of the latest update of the Single Ventricle Reconstruction trial, specifically SVR III. How are HLHS patients are faring post Norwood at age 12? What is the overall transplant-free survival rate in this group? Are there differences in survival seen at 12 years between BTTT shunt patients and RV-PA conduit shunt patients? How do they compare in exercise capabilities? What about rates of PLE or arrhythmias seen? Are there interventions that may improve outcomes going forward? These are amongst the questions reviewed this week with the first author, Dr. Caren Goldberg who is Professor of Pediatrics at the University of Michigan. DOI: https://doi.org/10.1161/circulationaha.123.065192

This week we delve into cardiovascular surgery when we review a recent report from the Congenital Surgeons' Society on the outcomes of the hybrid approach of pulmonary artery bands for treatment of infants with critical left heart obstructive disease. What risk factors are associated with worse outcomes? Does this approach confer an advantage in comparison to the traditional 'stage I/Norwood' approach to this problem? Does the presence of multiple risk factors worsen outcomes and if so, to what degree? How does the heterogeneity of indications for this approach to obstructive left heart lesions stymie efforts to study this intervention? DOI: 10.1016/j.jacc.2023.07.020Editorial Comment :DOI: 10.1016/j.jacc.2023.08.023

Listen as Julie shares her son Evan with us. Julie did not know she was pregnant until she went into labor at a MedExpress. Since she had never had any pregnancy symptoms and no prior prenatal care, doctors estimated she was around 30-32 weeks when she went into labor. After arriving at the hospital, Evan was was diagnosed with HLHS, a rare genetic condition in which the left side of the heart is underdeveloped. In this type of condition, a minimum of 3 surgeries are needed within the first 2 years of life in order for survival. They were told that a majority of children with this condition do not reach their 18th birthday. Evan also had a leaky tricuspid valve so the cardiologists at Children's Hospital of Pittsburgh weren't able to offer surgery to correct it, meaning that his condition would ultimately end in death either by leaving him on the ventilator or removing life support. Julie and her husband made the difficult decision to remove life support, so that Evan would no longer be in pain.

This week we review a recent large scale assessment of survival amongst patients with CHD who were born between 1980 and 1997 in the US. What percentage of those born with CHD actually survived to age 35? What were the factors associated with improved or worse outcomes? How did those with HLHS fair in this time period? What was the impact of genetic syndromes or non-cardiac abnormalities on outcomes of children with congenital heart disease? We speak with this week's work's first author, CDC epidemiologist, Ms. Karri F. Downing. https://doi.org/10.1161/circulationaha.123.064400

This week we review a recent fascinating work from the team in Toronto on a novel large mammalian model of HLHS (in fetal lambs). How did the team develop this model and what insights into the development of HLHS has it afforded? How does reduction in inflow to the developing LV result in changes in cellular proliferation in the LV of the fetal lamb? Which is more important in the development of HLHS - genetics or flow patterns? Is this a false dichotomy? Does this novel model provide insights into outcomes thus far observed in fetal interventions for HLHS and aortic stenosis in humans? We speak with the senior author of this week's work, Professor Rajiv Chaturvedi of the University of Toronto about this potentially groundbreaking new model and some of the insights it has provided. https://doi.org/10.1038/s42003-023-05132-2

This week we delve into the world of cardiovascular surgery when we check in with the group from Nationwide Children's Hospital and review a novel approach to managing the dreaded LPA stenosis or hypoplasia in the HLHS patient. Why does the LPA seem to be small or stenosed in this condition and how does a preemptive stent address this? Why can't standard PA plasty be used for this particular indication as is used in TOF/MAPCA's? Does one stent size fit all HLHS patients? These are amongst the many questions posed to the first author of this week's work, cardiovascular surgeon Dr. Sergio Carillo. https://doi.org/10.1016/j.xjon.2022.11.007

In this week's episode we delve into the evidence for digoxin reducing mortality in the interstage period following Norwood palliation for HLHS. We speak with Assistant Professor of Pediatrics at the University of Pennsylvania, Dr. Michael O'Byrne about a recent analysis of the PHIS database using the relatively novel “preference based instrumental variable” approach to analysis of an observational data set. How does this approach allow for possible proof of causation of effect of a variable? Why might digoxin reduce mortality in the HLHS patient following stage I palliation? Are there patients in which the impact of this agent might be greater than others? These are amongst the many questions reviewed this week with Dr. O'Byrne.https://doi.org/10.1016/j.ahj.2023.05.005

What was it like to give birth to a baby with hypoplastic left heart syndrome (HLHS) in the 1990s? How would it feel like to watch that miracle child grow up to become a mother herself? What is it like to then see your daughter's daughter for the first time? Answers to those questions and many more will be answered in this Mother's Day Special Heart to Heart with Anna episode. Meg Didier is a 30-year-old hHLHS survivor and a mother. After we finished recording her episode, “HLHS Survivor and Mother” earlier this year, I said it would be so wonderful to have her back on the show with her own mother for May 2023, especially in celebration of Mothers' Day and she agreed.Patty Hansen and I “met” online over two decades ago, when the Internet was young. We met via a listserv and shared inspiring stories about our heart warriors, questions we had, and shared concerns. We prayed for one another, gave helpful advice, and encouraged one another. When I decided to put together an anthology of stories by women around the world affected by congenital heart defects, Patty contributed an essay entitled ‘Finding the Good,' which you can read starting on page 179 of “The Heart of a Mother.” This is my first time to actually speak with Patty!& so much moreA bi-monthly podcast where we share the stories of our Caregivers, patients and...Listen on: Apple Podcasts SpotifyTo purchase Snow in Vietnam go to https://quillhawkpublishing.com/products/snow-in-vietnam-a-historical-fiction-novel We so appreciate everyone who likes, loves, or gives our social media posts a happy emoji. We also appreciate people who share our posts or engage in conversation with us. Thanks, too, to the people who just started following us on Instagram, YouTube or other social media platforms. We appreciate you all!Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

This week we delve into the world of adult congenital heart disease when we review a recent work from the ACHD team at UCSF that assesses the impact of BMI on clinical outcomes in the single ventricle adult Fontan patient. What is the cause of elevation in BMI in some Fontan patients? Is obesity the only explanation? Is BMI a modifiable risk factor for our Fontan patients and should exercise be 'prescribed' for these patients? If so prescribed, what type of exercise is best for the Fontan patient? This week's work's senior author, Dr. Anushree Agarwal, Assistant Professor of Medicine at UCSF, shares her insights into this important topic. DOI: 10.1161/JAHA.122.026732Also mentioned in today's episode is episode #222 with Dr. Dan Halpern of NYU medical center (https://www.stitcher.com/show/pediheartpediatric-cardiology-today/episode/pediheart-podcast-222-impact-of-cardiac-rehab-on-exercise-tolerance-in-the-achd-patient-206781483)

Jenny loved her job as a social worker. She was proficient in handling crises and passionate about serving others. Unfortunately, as Jenny faced unimaginable hardships in her personal life, everything in her professional toolbox was not enough to persevere. Only God and her growing faith would sustain her through multiple hardships. In this episode Jenny shares: -The birth of her daughter Faith and discovering a complex congenital heart defect, followed by 8 life risking open heart surgeries -Almost losing Faith in an early surgery and how God positioned the exact people she would need to help support her in a low moment -Losing her mother suddenly, followed shortly after with losing her husband suddenly and becoming a widow at 36. With this mountain of grief she would face yet another life threatening surgery for her growing daughter -Feeling God's presence so clearly but in different ways throughout her journey -The blessing of amazing health care professionals and being invited to be with Faith as she was anesthetized in the operating room 31:00 Seeing through spiritual eyes and the angels that were standing near every person in the operating room and the peace it gave her in a scary moment -An update on Faith and what God is doing in and through her life -Being called to write her book about the journey to bring others hope -Seeing God in the details of how he connected her to family of the man to whom she dedicated her book -Being called to ministry, a podcast, radio and other ways she loves to encourage others in their trials About Jenny Muscatell Jenny Muscatell is a licensed social worker, blogger, best-selling author, radio host for #truthin5 on Christian Mix 106, and photographer.  Jenny is also the Co-founder of Muscatell Ministries, Valiant Works Publishing, The Heart Community Collection and serves as the Creator and Editor in Chief for CHD Magazine. With over two decades of experience in the social services field, Jenny has established an extensive reservoir of expertise specializing in crisis intervention, health systems, and end-of-life care. Her career path has provided her with the reasoned perspective required to thoughtfully examine any number of topics. Jenny is deeply passionate about the work she does. She has been regarded as a fierce advocate, and a beacon of truth, fairness, and commonsense.   Jenny is the author of the Amazon Best Selling book, “The Journey of Faith and an Open Heart.” As a public speaker, she has shared her faith and experiences on a variety of podcasts, social media platforms, radio and television.    Widowed at 36, and mom to an HLHS warrior who has required eight major open-heart surgeries - Jenny knows the ache of difficult times. She spends countless hours supporting the heart community through various efforts and works hard to help others stand in perseverance and cling to hope.    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.    Jenny's Website: www.muscatellministries.com or JennyMuscatell.com   Jenny's Book: The Journey of Faith and an Open Heart  (Also found at Walmart, Barnes & Noble and more) Faith's CHD Tablet Talk website is https://www.chdtablettalk.org/

We are back this week with Part 2 of Jacqui Christianson's story! Last week Jacqui was incredibly vulnerable in sharing the loss of her precious son Teddy when he was only 79 days old. Jacqui and her husband Matt took time to recover from the shock, grieve and continue on with life though they knew they would never be the same. They clung to God and to each other and slowly began to process the thought of having another child. Jacqui got a job, they took a trip to London and let the Lord bring about some healing. In the summer of 2016, they found out they were pregnant again. Because of Teddy's HLHS diagnosis they did early testing for their baby and found that he was healthy and developing normally. As we've said many times, God works in ways we don't always understand and though their baby was healthy Jacqui experienced some pregnancy complications that completely changed their plan for birth. Jacqui and Matt were once again in a situation where they had to totally and completely rely on the Lord for healing and strength. You will hear about how Baby Benji came into this world and what life has looked like since both Teddy and Benji's births. Jacqui is open with us about how she feels the Lord has spoken to her about her future as a mother and gives great wisdom into how to support those that are grieving. One keynote Jacqui gives is this - when someone loses a child, we are quick to reach out to the mother; don't forget about the dads. Would you please subscribe and leave us a review? This will help our podcast reach more people! We'd love it if you'd share this podcast with your friends on social media and beyond. Join us next Wednesday to hear another story of God's faithfulness! 

We are truly honored to be sharing today's conversation with you. Our host Sarah Schalow was joined by Jacqui Christianson in the studio to share the story of her precious son Teddy.⚠️ Before you listen, we do want to give you a trigger warning for this episode. Pregnancy complications and the death of an infant are discussed in this conversation. ⚠️Being raised her whole life in Arizona, Jacqui was ready to get out of state after college and decided to move to the Seattle area to start a career and a new life. She ended up living there for a little over six years while working as a Radiological Control Technician at a shipyard. During that time, she met her husband Matt who was serving in the Navy through mutual friends. They had been married for about three years when they decided to start a family and move back to Arizona to be closer to family. Jacqui was three months into her pregnancy when the doctors told her that her baby had something called Hypoplastic Left Heart Syndrome (HLHS). This is a condition in which the baby's left side of the heart does not form correctly. This diagnosis changed everything. Though this condition was not unheard of it still was considered rare and required a lot more doctor appointments and preparation for birth and life after. Jacqui and her husband had to begin preparing for multiple heart surgeries for their son, the first being just days after birth. In November of 2014 they got to meet their precious son Teddy. His first heart surgery was successful, and Jacqui and Matt did all they could to settle into a new normal being first time parents with a son who needed extra attention and care. There were complications but at the same time Teddy was developing well. There was hope. God at times works in ways that we do not understand, and Jacqui and Matt had to soon say goodbye to their son. We feel privileged that Jacqui was willing to share such a deep point of pain with us, but we know that you are going to be inspired by Jacqui's strength and her willingness to release her pain to the Lord. Information on HLHS: https://www.mayoclinic.org/diseases-conditions/hypoplastic-left-heart-syndrome/symptoms-causes/syc-20350599Would you please subscribe and leave us a review? This will help our podcast reach more people! We'd love it if you'd share this podcast with your friends on social media and beyond. Join us next Wednesday, March 29th for Part 2 of Jacqui's story!

Dana Henning is mother to Evan Henning, who is a 12-year-old Heart Warrior born with a critical congenital heart defect. Evan has has multiple procedures and open-heart surgeries. His life is very full of therapy appointments, homeschool activities, and extra-curricular activities such as Special Olympics and track.Dana is musically gifted. She is a former music teacher and choir director. These days she homeschools Evan and works as the Mended Little Hearts Austin Coordinator. She also works with the Parent Faculty Advisory Counsel at Dell Children's Hospital in Austin, Texas. She serves on the Cardiac Patient & Family Partners team and her family is a member of the Dell Children's Trust.In this episode, Dana talks to Anna about what Mended Little Hearts does for the congenital heart defect community, how she is involved, and some of the activities the Austin Mended Little Hearts organization participates in. Of special note is an event occurring at an ice skating rink in Cedar Park in April 2023.Links mentioned in this broadcast:Dana's other Heart to Heart with Anna appearance:https://www.buzzsprout.com/62761/770246Mended Little Hearts National page:https://mendedhearts.org/about-us/about-mended-little-hearts/Austin Mended Little Hearts Facebook page:https://www.facebook.com/MendedLittleHeartsAustinEmail:mendedlittleheartsaustin@gmail.comThe Heart Dialogues:https://theheartdialogues.substack.com/Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

This is the final Heart Dad Sunday mini-series episode for Heart Month, February 2023. Frank Jaworski, Anna Jaworski's husband, and Heart Dad to a single ventricle heart warrior is back as the Guest Host. In this episode he interviews Dan Rodenbaugh.Dan is father to Caylee Rodenbaugh, who was born on June 26, 2009, at St. Luke's hospital in Lee's Summit, Missouri. Caylee is his fourth daughter, but the first one with a heart condition.Dan Rodenbaugh is 52 years of age and he's been happily married to Marie for 27 years. He was born with a heart defect and was treated at Children's Mercy Hospital until he was 18 years old.He had a heart murmur which led to the discovery of his heart condition. Regardless, he did sports, including football, although he tired easier than other athletes his age.In this episode, Frank talks to Dan about growing up with a congenital heart defect, what it was like to find out that his daughter also had a congenital heart defect, and what advice he has for his daughters and others when they have a history of congenital heart defects in their families. Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

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  

Here is another episode in our Wednesday Writer Chat series of “Heart to Heart with Anna.” This is a special mini-series produced for Heart Month, February 2023.Today's show is Beauty Queen Author and our Guest is Faith Brackett. We'll start today's program by learning a bit about Faith and her health condition in Segment 1. In the second segment, we'll talk about how Faith came to write a book and in the final segment, we'll talk about how Tablet Talk and how Faith and her sister are working to help other children in the hospital.Faith Brackett was born in the mid-1990s with HLHS. She has had 8 open-heart surgeries and was the first child to undergo what is now known as the bi-ventricle repair. She also received a valve-in-valve tricuspid replacement via the cath lab. She has a Bachelor's Degree in K-8 Elementary Education and a minor in Psychology. Faith has worn many hats, including educator, advocating for people with CHD, serving with CHD organizations, member of the Ultimate International Miss Organization, author, founder of CHD Tablet Talk, speaker, and content creator/ blogger. Links related to this Guest:www.faithbrackett.com www.chdtablettalk.org Instagram: @faithbrackett_ Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

How can one mom make a difference when it comes to children born with special needs? What kind of comfort and support is available to children living with a range of illnesses and disabilities? How can you get involved in helping our most vulnerable children feel supported?Lilac Lumpkin is a mom to angel Heart Warrior Jaxon, who was born with HLHS. Jaxon loved many things in his life: pizza, superheroes, mac & cheese, and his mom. He never complained and never gave up. Jaxon lived to 5 years of age - 3 years longer than the doctors expected. To honor his life, Lilac started promoting a charity "Warrior Pets and More" which provides comfort and support to children living with special needs and raises awareness for a range of illnesses and disabilities. The charity provides children with their own “Warrior Pet,” a customized stuffed animal embroidered with the child's name and inspirational messages and shares the child's story on their Facebook page. Every year for Jaxon's birthday, Lilac and her husband Michael sponsor as many Warrior Pets as they can to bring joy to others. Lilac is also a stepmom to three wonderful children.    Link to Warrior Pets and More: https://www.facebook.com/profile.php?id=100086189692329Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

With congenital heart defects being the #1 birth defect around the globe, there are many people touched by this condition. At least 1% of the population is born with a heart defect. Many of them will be innocent murmurs that will close up on their own. But some people have more serious heart conditions.In this special mini-series episode for Heart Month 2023, Anna asks her Listeners to identify some famous musicians who have been touched by CHDs. So many people think that if they have a heart defect, they won't have the stamina to become great at what they love. That's not true, my friends, and the following FOUR people are an example of how people can still excel, despite having a heart defect. Do you know who these people are? See if you can guess!Links to other shows you may enjoy:Paul CardallThe Broken Miraclehttps://www.buzzsprout.com/62761/9193481Heart Dad Sunday -- A Child's Role in Transplant Recovery for a Heart Dadhttps://www.buzzsprout.com/62761/12186961Myles SchweitzerSeizing the Day with Myles Schweitzer!https://www.buzzsprout.com/62761/398954Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

Is it possible to have a baby if you are a woman who was born with HLHS? What problems can occur when a person with a single ventricle heart becomes pregnant? What advice would a Heart Warrior offer others trying to have a baby? Meghan Roswick-Didier is 30 years old and was diagnosed with HLHS at 7 days of age. She had four open-heart surgeries at the Children's Hospital of Philadelphia including the Norwood at nine days old, the hemi-Fontan at seven months old, the Fontan at 13 months old and a surgery to open her ASD at two-and-a-half-years old. Her doctors encouraged her to set her own limits which she did. She enjoyed gymnastics and sports in high school and never let anything hold her back. In her early 20s she suffered a devastating stroke and took a year to recover. Meg has studied Neuroscience at the University of Cincinnati, coaches gymnastics and advocates for better patient care for adults with congenital heart defects. In 2022 she embarked on her biggest journey yet, as she and husband Dustin became parents to daughter Lucy. Meg joins us today to talk about her experiences of pregnancy, birth and motherhood as a HLHS survivor.Meg's Social Media Links:FB: Meghan Roswick Didier - HLHS IG: Meg DidierSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

Is it possible there could actually be a cure for congenital heart defects? If so, what might that cure look like? Who would be responsible for creating such a cure?Welcome to our first Medical Monday mini-series for Heart Month 2023. In this episode, you'll revisit HeartWorks, a very special company that is changing the face of treatment for those born with single ventricle hearts, especially hypoplastic left heart syndrome.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. Dr Nelson joins us today to talk about recent advancements in the treatment of HLHS. For more information about HeartWorks, visit their website - https://www.heartworksinc.org/.Follow HeartWorks on Twitter - @webuildhearts.Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

How can a child help her father recover from heart transplant surgery? How important is it for parents to allow their children to be part of the recovery process? What advice does a heart transplant recipient have for others facing being listed for transplant when they are the parents of a young child?This is the first Heart Dad Sunday episode for February 2023 and Frank Jaworski is our Guest Host. Paul Cardall was born in 1973 with only half a heart. He had his first surgery a few hours after birth and two more surgeries at age 13 and 14. As a child, he took piano lessons, but wasn't keen on practice. As a teenager, he started composing and became obsessed. He was hired to play at weddings, in restaurants and department stores. In 1994, author Richard Paul Evans invited him to compose a musical adaptation of his Number 1 New York Times best-selling novel The Christmas Box, which helped launch Paul's professional career. In 1999, Paul founded Stone Angel Music, where he released his albums independently. His albums debuted at Number One on eight Billboard charts and have earned over 2 billion streams on Pandora alone. By 2008, Paul's health had declined to the point where he was placed on the transplant list. Following his transplant in 2009, Paul experienced a newfound energy. Today, he lives a very full and active life as an entrepreneur, recording artist, podcast host of All Heart with Paul Cardall, husband and father. Other Links you might enjoy:Paul Cardall's previous Heart to Heart with Anna appearance: https://www.buzzsprout.com/62761/9193481Eden Cardall's page: https://edencardall.com/Paul's Website, Book and Album: https://www.thebrokenmiracle.com/ Paul's Podcast (All Heart with Paul Cardall): https://paulcardall.com/podcastSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

This week we replay a 2020 episode in which we reviewed a then recent PCCC study assessing outcomes of single ventricle patients who have undergone replacement of the AV or semilunar valve. We speak with Professor Geetha Raghuveer of University of Missouri-Kansas City about this work she co-authored. Outcomes are generally poor in this patient group but are there lessons that can be gleaned from the data regarding optimal timing for repair or replacement of valves in this patient group? This is a great follow-up of episode # 58 from 3.5 years ago. See you next week with a brand new episode! doi: 10.1007/s00246-019-02234-9.

This week we review a recent report from the team at Children's National Hospital in Washington, DC on their experience with the hybrid approach to high risk infants with ductal-dependent systemic circulation. Some patients get ductal stents and others not. How is this decision made? How difficult was it to change the approach of a center that had a reputation for excellence with a more 'traditional/Norwood/Stage I palliative' approach? Are there theoretical advantages to this approach for even 'low risk' patients? We speak with the senior author of this report, Dr. Can Yerebakan who is Associate Professor of Surgery at George Washington University School of Medicine and Health Sciences. doi: 10.1016/j.jtcvs.2021.11.103

This week we review a recent cardiac MRI report on Fontan geometry and hemodynamics as measured by computational fluid dynamic analysis. How do factors like Fontan geometry or 'power loss' relate to quality of life for the Fontan young adult patient? How do these data inform imaging in the operating room during these palliations? We speak with the first author of this work, Associate Professor of Pediatrics at U. Penn, Dr. Laura Mercer-Rosa about this important and intriguing work. https://doi.org/10.1016/j.athoracsur.2022.01.017

This week we review a recent work on outcomes of univentricular adult patients who have not been palliated with a Fontan. Do these patients fare better than Fontan patients? What factors are associated with worse or better outcomes? How do these factors inform decision making for the single ventricle adult patient? We speak with adult congenital expert, Dr. Danielle Massarella of University of Toronto about her thoughts on this work and some of its important lessons. DOI: https://doi.org/10.1016/j.cjca.2021.06.001

In this replay of episode 92 from 2019, we speak with cardiovascular surgeon Dr. Johann Brink about a recent work he co-authored from the Royal Children's Hospital in Melbourne, Australia about the team's experience with shunt malfunctions. Are there factors that are associated with shunt failure in this sometimes fragile patient group? Survival to Fontan in most series is roughly 70% - what, if anything, can 'move the needle' to higher levels of survival in this patient population? Dr. Brink offers some interesting and important insights this week. doi: 10.1016/j.jtcvs.2019.03.126

We had a nice chat with HLHS patient, heart recipient & Tulane student, Blake Babin and his mom, Jennifer. We learned all about what it was like for Jennifer to experience becoming a CHD mom & transplant mom in a matter of two short weeks! Blake shares many words of inspiration for CHD & transplant patients.