Heart Transplant for Children: A Mother and Son Face Danon Disease Together

Heart Transplant for Children: A Mother and Son Face Danon Disease Together

Author: Katie Taylor, Certified Child Life Specialist October 1, 2025 Duration: 49:41

Psychologist and heart-transplant recipient Dr. Brittany Clayborne shares how her own medical journey prepared her to guide her son Micah through sudden heart failure, an LVAD, and a life-saving transplant. She unpacks the family's rare Danon's disease diagnosis, post-transplant cancer (PTLD), and the everyday realities after transplant—meds, setbacks, and hope. You'll learn Dr. Brittany's BRAVE framework for hard moments, how rituals sustain connection during long hospital stays, and how Micah turned his experience into action with Transplant Teens and My Brave Journal. This conversation is packed with concrete tools, compassion, and the reminder that "hope is a team sport." You do not want to miss this week's episode.

Featured moments:

  • 00:00 — Why families need "somewhere to be brave."

  • 04:50 — Brittany's peripartum cardiomyopathy, ICU wait, and LVAD.

  • 10:05 — PTLD diagnosis and becoming the psychologist she needed.

  • 12:50 — Micah's chest pain → HCM crisis and transplant path.

  • 24:00 — The BRAVE acronym families can use today.

  • 44:00 — "Hope is a team sport." Transplant Teens' vision.

Key takeaways:

  • Use BRAVE in tough conversations: Breathe • Realize feelings • Accept them • Vent/Vulnerable with a trusted person • Elevate above it.

  • Build predictable touchpoints (calls/visits) to anchor kids during long hospitalizations.

  • Teens heal better with peers; if the group doesn't exist yet, create it.

Resources mentioned:

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The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child is experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

 

 


Hosted by Katie Taylor, a Certified Child Life Specialist, Inside the Children's Hospital is a quiet space for the often unspoken journey of pediatric illness. This podcast moves beyond the clinical to explore the human heart of the hospital, offering conversations that feel more like a shared cup of coffee in a waiting room than a formal interview. You'll hear directly from parents and caregivers who articulate the complex mix of fear, resilience, and love they experience, while pediatric nurses, doctors, and therapists provide their unique professional perspectives on fostering healing and normalcy. The discussions naturally delve into the practicalities of family life disrupted, the emotional weight carried by all involved, and the small, profound moments of hope that sustain people. It’s a resource for anyone connected to a child’s health challenge, whether you're a family member seeking solidarity, a friend looking to understand, or simply someone interested in the intersection of medicine and humanity. Each episode aims to validate the listener's own feelings, whether they are in the midst of a crisis or reflecting on one, by presenting these authentic narratives without sugarcoating yet always with profound compassion. Tune in to find a sense of community and a deeper appreciation for the delicate, powerful work happening within those walls.
Author: Language: English Episodes: 100

Inside the Children's Hospital
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