Tiny Little Hearts Podcast: CHD and Heart Mom Life
Tiny Little Hearts Podcast is your honest, unfiltered space for the CHD (congenital heart disease / congenital heart defect) community. Whether you're a heart parent, a CHD warrior, or someone newly navigating a complex congenital heart diagnosis — this podcast was made for you.
Hosted by Katelyn McMahan, a mom of three girls whose world changed the moment she learned her youngest daughter had complex cardiac abnormalities. She searched for real stories — kids with complex CHD, single ventricle hearts, hypoplastic left heart syndrome, and other congenital heart defects— not the polished highlight reels, but the honest, raw truth of what this life actually looks like. She wanted to prepare her heart for the good, the bad, and the ugly.
Each episode features conversations with heart parents, CHD adults, providers, and others navigating the deeply real world of congenital heart disease, open heart surgery, and medical complexity. You'll hear practical advice, emotional honesty, and stories that remind you that you are not alone in this journey. Because this life is hard — and you deserve a place to feel seen.
Topics covered include: CHD diagnosis, heart surgery recovery, parenting a medically complex child, grief and resilience, NICU and PCICU experiences, fontan circulation, cardiac catheterization, and life after a congenital heart defect diagnosis.
Support this show: https://www.buzzsprout.com/2464576/support
Tiny Little Hearts Podcast: CHD and Heart Mom Life
25. It’s Not Your Season…Right Now: Half a Heart With a Full Life
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In this episode, host Katelyn McMahan sits down with Liz Gaston — heart mom, CHD advocate, and co-founder of Project 1 in 100 — for a deeply honest conversation about life after a prenatal congenital heart disease diagnosis. Liz shares her journey raising her four-year-old son Ben, who was born with single ventricle heart disease, double outlet right ventricle (DORV), and has completed all three stages of the Fontan surgery pathway.
Together, Katelyn and Liz explore the emotions, fears, and unexpected growth that come with being a congenital heart defect (CHD) parent — and why advocacy isn't optional when it's your child's heart on the line.
In This Episode:
- Ben's story: His diagnosis at the 20-week anatomy scan, life with a half heart, and how he's flourishing at age four — superhero obsessed, theater-bound, and full of joy
- The unspoken fears every CHD parent faces after diagnosis: Will my child have friends? Will they be treated differently? Can they keep up with other kids?
- How Liz learned to let Ben try soccer, superhero camp, and theater — and why trusting his body to communicate its own limits was a turning point
- Talking to your child about their heart: When to start, how much to share, and navigating the balance between awareness and letting them just be a kid
- Preserving your identity as a heart mom: Liz's honest reflection on going dark on social media for nearly three years, shrinking her circle, and slowly finding herself again post-Fontan
- Project 1-100: The mission to unite the CHD community, amplify awareness of congenital heart disease, close the funding and resource gap, and their growing community resource map of 40+ organizations across the U.S.
- The gap in maternal care and CHD education — why so many families arrive at their fetal echocardiogram having never heard the words "congenital heart defect"
- In utero CHD diagnosis vs. postnatal diagnosis: What each brings, and the unexpected gift of time to prepare
- Finding yourself again after the Fontan: Moving to Charleston, solo grocery runs, and why "my toddler" is a completely valid answer to "what's your hobby?"
Resources & Links:
- Instagram: Liz Gaston
- Instagram: Project1in100
- Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts Foundation
- Use the code TINYLITTLEHEARTS for 10% off Better Days Co
Let’s Connect!
- Follow me on Instagram @tinylittleheartspodcast
- Follow me on Substack at Tiny Little Hearts Substack
- This episode was brought to you by the Pivot Ball Change Network.
Keywords: congenital heart disease (CHD), CHD awareness, heart mom podcast, single ventricle heart disease, Fontan surgery, prenatal heart diagnosis, in utero CHD diagnosis, congenital heart defect parent