Three days to live is the kind of sentence that splits life into before and after. Heart dad Danny Espinoza takes us back to the fear of an in utero diagnosis, the pressure to give up, and the choice to keep going anyway. Fifteen years later, his daughter Demi is still here after tetralogy of Fallot, pulmonary atresia, MAPCAs, 13 open heart surgeries, ECMO, and a level of medical trauma that most families can barely imagine.

Filmmaker Sara-Jane Walsh joins us to share why she’s making Tested Love, a short documentary that focuses on fatherhood, faith, and mental health in the congenital heart disease community. We talk about how music can become a lifeline, how community support turns isolation into connection, and why honest storytelling can reach far beyond the hospital walls.

We also name what often stays unspoken: depression, anxiety, PTSD, survivor’s guilt, and the stigma around men seeking help. Danny shares what therapy changed for him, how he learned to advocate by asking hard medical questions, and what it means to show your kids that it’s okay to cry while still refusing to quit.

If you’ve ever lived through the cardiac ICU, supported someone with CHD, or wondered how families rebuild after crisis, this conversation is for you. Subscribe for more congenital heart conversations, share this with a heart family who needs it, and leave a review with your biggest takeaway.

Link to Here's Heart Hope Project: https://bit.ly/47Kf7q0

Here's Hope Project Facebook Page: https://www.facebook.com/hereshopeproject

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In the first episode of Season 4, Anna Jaworski announces that The CHC Podcast: Congenital Heart Conversations has been reintroduced as Congenital Heart Chronicles after listener voting. This reflects the show’s focus on lived-experience stories and improved discoverability. Anna is joined on video by core volunteers Annie Ulchak (hypoplastic left heart syndrome Fontan patient), Ayrton Beatty (bereaved sibling with drug-induced long QT syndrome), and Nicholle Bilodeau (bicuspid aortic valve diagnosed at 44 with surgery a week later) to discuss the rebrand’s goals, risks, and minimal changes to content and format. They preview 2026 episodes on menopause, gratitude, CHD documentary “Tested Love,” dog therapy, music therapy, hypnotherapy, stroke awareness, emotional transitions, caregiving, World Heart Day, and nonprofits, and share ways to volunteer, sponsor, or join the Hearts Unite the Globe community.

Hosted on Acast. See acast.com/privacy for more information.

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.

Chapters:

00:00 Introduction and Episode Overview

00:17 Meet the Hosts and Co-Producer

01:04 Introducing Today's Guests

03:34 Misconceptions About Hospice Care

06:14 Psychological Perspectives on Hospice

09:32 Palliative Care for Children

17:59 Communicating with Children About Death

22:19 Balancing Emotional, Spiritual, and Physical Needs

24:30 Changing Society's Approach to Death

31:46 Navigating Uncertainty with Congenital Heart Defects

35:05 Small Acts of Kindness

35:49 Learning from Life's Experiences

36:04 Hope and Quality of Life

36:34 Acknowledging Life's Realities

37:26 Panelists' Closing Remarks

38:09 Heartwarming Stories and Resources

39:01 End of Life Care Discussion

39:50 Importance of Acceptance and Preparation

40:59 Personal Experiences with End of Life

44:34 Role of Medical Professionals

53:08 Children and End of Life Conversations

58:37 Final Thoughts and Takeaways

01:04:37 Upcoming Changes and Farewell

Hosted on Acast. See acast.com/privacy for more information.

Hosted on Acast. See acast.com/privacy for more information.

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.

Hosted on Acast. See acast.com/privacy for more information.

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: BraveLittleHeartsSA

https://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-G7i4M1w5w

Email: blhsachd@gmail.com

Fundacion Estrellita de Belen: https://www.fedbhearts.org

Instagram @estrellitadbelen

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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)

Hosted on Acast. See acast.com/privacy for more information.

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.

Hosted on Acast. See acast.com/privacy for more information.