End-of-Life Care with CHD

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 &amp; Noble. Chapters: 00:00&nbsp;Introduction and Episode Overview00:17&nbsp;Meet the Hosts and Co-Producer01:04&nbsp;Introducing Today's Guests03:34&nbsp;Misconceptions About Hospice Care06:14&nbsp;Psychological Perspectives on Hospice09:32&nbsp;Palliative Care for Children17:59&nbsp;Communicating with Children About Death22:19&nbsp;Balancing Emotional, Spiritual, and Physical Needs24:30&nbsp;Changing Society's Approach to Death31:46&nbsp;Navigating Uncertainty with Congenital Heart Defects35:05&nbsp;Small Acts of Kindness35:49&nbsp;Learning from Life's Experiences36:04&nbsp;Hope and Quality of Life36:34&nbsp;Acknowledging Life's Realities37:26&nbsp;Panelists' Closing Remarks38:09&nbsp;Heartwarming Stories and Resources39:01&nbsp;End of Life Care Discussion39:50&nbsp;Importance of Acceptance and Preparation40:59&nbsp;Personal Experiences with End of Life44:34&nbsp;Role of Medical Professionals53:08&nbsp;Children and End of Life Conversations58:37&nbsp;Final Thoughts and Takeaways01:04:37&nbsp;Upcoming Changes and Farewell

Caring Through Complexity

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.

Living Authentically

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.

Rescue & Resilience

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/BraveLittleHeartsSALinkedIn: Brave Little Hearts South Africahttps://www.linkedin.com/in/brave-little-hearts-south-africa-611b35b9/?originalSubdomain=zaYouTube: 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

World Heart Day 2025

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)

Love Beats On

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.

Bridging Gaps

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.

How Fathers Navigate the World of Congenital Heart Defects

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

Child-Free Futures and Family Planning with CHD

Triumphs and Trials of Multiple Transplants

In this episode of The CHC Podcast: Congenital Heart Conversations, co-hosts Jason Crutchley and Jess Cowin, delve into the complex lives of multiple transplant recipients. Guests Krysta Falloon and Chuck Estrada share their poignant journeys through heart transplants necessitated by congenital conditions, providing a raw look at the ongoing challenges faced post-transplant. The discussion touches on the emotional and physical tolls, medical innovations, and the stark reality that transplantation is a treatment—not a cure. Panelists discuss the broader implications on quality of life and navigate the misconceptions about transplants. This episode is a deep dive into resilience, medical advancements, and the relentless quest for normalcy.

Heart Stories

Congenital Heart Conversations

The CHC Podcast: Congenital Heart Conversations is a podcast for and by the CHC (congenital heart condition) community. Hosted by heart mom Anna Jaworski and Guest Co-Hosts, they will talk with people about a variety of topics of interest when living with a life-threatening chronic illness.

The CHC Podcast

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