The CHC Podcast: CHD Conversations

HUG Podcast Network
  • 5.0 (2)
  • MEDICINE
  • UPDATED MONTHLY

The CHC Podcast: Congenital Heart Conversations is a podcast for and by the CHD community. Hosted by heart mom Anna Jaworski and The CHC Podcast Team, they will talk with people about a variety of topics of interest when living with a life-threatening chronic illness. Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

  1. Caring Through Complexity: End-of-Life Care

    12/29/2025

    Caring Through Complexity: End-of-Life Care

    (00:00:00) Introduction and Episode Overview (00:00:17) Meet the Hosts and Co-Producer (00:01:04) Introducing Today's Guests (00:03:34) Misconceptions About Hospice Care (00:06:14) Psychological Perspectives on Hospice (00:09:32) Palliative Care for Children (00:17:59) Communicating with Children About Death (00:22:19) Balancing Emotional, Spiritual, and Physical Needs (00:24:30) Changing Society's Approach to Death (00:31:46) Navigating Uncertainty with Congenital Heart Defects (00:35:05) Small Acts of Kindness (00:35:49) Learning from Life's Experiences (00:36:04) Hope and Quality of Life (00:36:34) Acknowledging Life's Realities (00:37:26) Panelists' Closing Remarks (00:38:09) Heartwarming Stories and Resources (00:39:01) End of Life Care Discussion (00:39:50) Importance of Acceptance and Preparation (00:40:59) Personal Experiences with End of Life (00:44:34) Role of Medical Professionals (00:53:08) Children and End of Life Conversations (00:58:37) Final Thoughts and Takeaways (01:03:10) Upcoming Changes and Farewell In this heartfelt episode of The CHC Podcast: Congenital Heart Conversations, hosts Anna Jaworski and Annie Ulchak, both deeply connected to the congenital heart defect community, delve into the sensitive topic of end-of-life care. Joined by expert panelists, including pre-planning specialist Rosa Hernandez, mental health professional Dr. Michael Groat, and palliative care nurse Maureen Groden, they explore misconceptions about hospice care, the psychological and emotional aspects of end-of-life discussions, and the importance of normalizing conversations about death. Personal stories, practical advice, and a focus on honest communication provide listeners with valuable insights into navigating these challenging times. Maureen Groden's book is entitled, When a Loved One is Dying: Conversations about Care, Connection, and Coping. Available at Amazon, Bookshop, and Barnes & Noble. Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

    1h 3m
  2. Living Authentically: Trans Journeys with CHD

    11/28/2025

    Living Authentically: Trans Journeys with CHD

    In this powerful episode of The CHC Podcast: Congenital Heart Conversations, host Anna Jaworski and co-host Ayrton Beatty honor Trans Awareness Month by delving into the intersection of congenital heart defects (CHD) and trans identities. Featuring heartfelt discussions with three unique guests—Hope Jaworski, Helen, and Kai Ayscue—the episode sheds light on the challenges faced by those living with CHD while navigating their gender identities. The episode also highlights the emotional and psychological impacts, including medical trauma, and the importance of support from both family and healthcare providers. With raw and inspiring stories, this episode aims to foster greater understanding and awareness within the CHD and broader communities. Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

    47 min
  3. Rescue & Resilience: Preventing Sudden Cardiac Arrest

    10/26/2025

    Rescue & Resilience: Preventing Sudden Cardiac Arrest

    In the 10th episode of season three of The CHC Podcast: Congenital Heart Conversations, host Anna Jaworski and co-host Ayrton Beatty discuss the importance of understanding CPR and sudden cardiac arrest. Guests Ben Weisbuch, a survivor of 135 sudden cardiac arrests and founder of the Heart Hope Foundation, and Dr. John Rogers, a cardiologist specializing in heart rhythm disorders and advocate for CPR and AED education, join them. The episode explores Ben's astonishing survival story, the genetic discovery linked to his condition, the latest advances in prevention and treatment, and the critical role of community awareness and education in saving lives. Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

    45 min
  4. World Heart Day 2025:Uniting Hearts Around the Globe

    10/01/2025

    World Heart Day 2025:Uniting Hearts Around the Globe

    In this episode of The CHC Podcast: Congenital Heart Conversations, co-hosts Annie Ulchak and Ayrton Beatty discuss the significance of World Heart Day for the congenital heart defect (CHD) community. Featuring inspiring interviews with Raadhiyah Matthews and Belen Blanton, founders of Brave Little Hearts South Africa and Little Star of Bethlehem respectively, the episode explores their life's work in advocacy, support programs, and the unique challenges they face. From educational initiatives for children to critical care in resource-limited settings, tune in to learn about the global efforts to raise awareness and support for those affected by CHD. Facebook: BraveLittleHeartsSAhttps://web.facebook.com/BraveLittleHeartsSA LinkedIn: Brave Little Hearts South Africa https://www.linkedin.com/in/brave-little-hearts-south-africa-611b35b9/?originalSubdomain=za YouTube: Brave Little Hearts S. A. https://www.youtube.com/channel/UCqfb7gcR5ofGH-G7i4M1w5wEmail: blhsachd@gmail.com Fundacion Estrellita de Belen: https://www.fedbhearts.org Instagram @estrellitadbelen Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

    53 min
  5. Love Beats On: Marriage & CHD Journeys

    08/24/2025

    Love Beats On: Marriage & CHD Journeys

    In this episode of 'The CHC Podcast Congenital Heart Conversations,' host Anna Jaworski, a heart mom to an adult with a single ventricle heart, is joined by her co-host Nicholle Bilodeau, who was born with a bicuspid aortic valve. The episode explores the unique challenges faced by individuals living with congenital heart disease (CHD) who are also married.   Two couples, Jason and Jen Crutchley, as well as Mark and Michelle DeRoo, share their stories of navigating marriage, medical uncertainties, and daily routines while dealing with CHD. They discuss how communication, mutual support, and understanding have helped them succeed as a couple. The episode also touches on the emotional and logistical aspects of living with CHD and provides strategies for maintaining intimacy and partnership during difficult times. Both couples offer insights and advice for newlyweds or couples beginning their journey together in the CHD community. Other Episodes You May Enjoy: Heart Stories: Triumphs and Trials of Multiple Transplants -- https://www.spreaker.com/episode/heart-stories-triumphs-and-trials-of-multiple-transplants--65819796 (featuring Jason Crutchley as a Co-Host) Voices of Victory: Overcoming Congenital Heart Challenges -- https://www.spreaker.com/episode/voices-of-victory-overcoming-congenital-heart-challenges--58745010 (featuring Michelle DeRoo as a Guest) Nurturing the Nurturers: Insights into CHD Caregiving -- https://www.spreaker.com/episode/nurturing-the-nurturers-insights-into-chd-caregiving--62573179 (featuring Mark DeRoo as a Guest) The Pulse of Perseverance: Unveiling the Heart Transplant Experience -- https://www.spreaker.com/episode/the-pulse-of-perseverance-unveiling-the-heart-transplant-experience--59714311 (featuring Jason Crutchley as a Co-Host) Transplantation in the CHD Community -- https://www.spreaker.com/episode/transplantation-in-the-chd-community--57464324 (featuring Jason Crutchley as a Co-Host) Town Hall Meeting: Feeling Different -- https://www.spreaker.com/episode/town-hall-meeting-feeling-different--53698411 (featuring Jason Crutchley as a Guest) Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

    54 min
  6. Bridging Gaps: Rare Conditions and Congenital Heart Defects

    07/28/2025

    Bridging Gaps: Rare Conditions and Congenital Heart Defects

    In this episode of The CHC Podcast: Congenital Heart Conversations, co-hosts Annie Ulchak and Ayrton Beatty tackle the complexities of living with congenital heart disease combined with other rare conditions. Special guests Hope Simmons, Scott Salvaggio, and Julia Mayfield share their personal stories and the unique challenges they face, from hospitalizations and multiple diagnoses to self-advocacy and forming supportive communities. The episode highlights the importance of understanding your own health conditions, advocating for proper care, and finding a supportive network. The discussion also addresses common issues like ADHD, autism, and mental health, offering practical advice for navigating these layered health challenges. Join us for an enlightening conversation that aims to bring awareness and hope to those living with multiple rare conditions. Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

    34 min
  7. How Fathers Navigate the World of Congenital Heart Defects

    07/02/2025

    How Fathers Navigate the World of Congenital Heart Defects

    (00:00:00) How Fathers Navigate the World of Congenital Heart Defects (00:10:58) Advice for CHD Fathers Fatherhood transforms when your child has a congenital heart defect—or when you're a heart warrior becoming a dad yourself. This powerful episode brings together fathers from across the CHD spectrum to share their journeys of strength, vulnerability, and unexpected wisdom. Shaun Jones takes us through the harrowing early days with his son Ledger, who underwent his first open-heart surgery at just two weeks old. "I honestly feel incredibly blessed that I even get to celebrate Father's Day," he shares, describing how each milestone carries profound meaning in their household. His approach of taking "one day at a time" offers a blueprint for managing overwhelming uncertainty. Joe Flowers provides the unique perspective of someone born with tricuspid atresia who became a father himself. Now facing heart failure at 44, he offers raw insights about emotional vulnerability: "I learned from a very early age to tough things out... and I just learned to shove that emotion down." His journey through addiction recovery has taught him the importance of allowing children to express their fears openly—something he wishes he'd experienced himself. Frank Jaworski, father to 30-year-old Hope who was born with a single ventricle heart, shares how parenting a heart warrior reshaped his perspective: "When things happen that drive me crazy... I try to put them in perspective and say they're not in the hospital, they're not having open-heart surgery." As both a healthcare professional and a CHD dad, he emphasizes the value of understanding both the technical and emotional sides of your child's condition. Throughout these conversations emerges a portrait of fatherhood marked by profound gratitude, unexpected strength, and the discovery that sometimes our greatest teachers are our children themselves. As Shaun poignantly observes about his son: "If my child can go through two open heart surgeries, he can do anything... I'm actually learning from him." Listen now for insights that will transform how you think about fatherhood, resilience, and what it means to parent with your whole heart. Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

    49 min
  8. Child-Free Futures and Family Planning with CHD

    06/01/2025

    Child-Free Futures and Family Planning with CHD

    In the 29th episode of The CHC Podcast, host Anna Jaworski, a heart mom to an adult with a single ventricle heart, and co-host Annie Ulchak, along with co-producers Nicholle Bilodeau and Guy Simkhay, discuss family planning choices for adults born with critical congenital heart defects (CHD). The episode features guests Amy Erhart and Meagan Houpt, both born with Hypoplastic Left Heart Syndrome (HLHS), who share their unique paths—choosing a child-free life and adopting, respectively. The conversation delves into the medical, social, and personal decisions impacting family planning, societal expectations, and the challenges and supports experienced along the way. The episode also addresses the impact of genetics, the challenges of adoption, and the emotional complexities involved in these life-altering decisions. Hearts Unite the Globe: https://www.heartsunitetheglobe.com Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

    52 min
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About

The CHC Podcast: Congenital Heart Conversations is a podcast for and by the CHD community. Hosted by heart mom Anna Jaworski and The CHC Podcast Team, they will talk with people about a variety of topics of interest when living with a life-threatening chronic illness. Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

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