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.

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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

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