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
30. Congenital Heart Disease & A Broken System: The Innovation That's Changing Everything
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In this episode, Katelyn sits down with Tim Nelson, MD, PhD and CEO of HeartWorks — a nonprofit at the forefront of congenital heart disease (CHD) innovation. What unfolds is a candid, unflinching look at why the healthcare system is failing CHD patients and families, and what it's actually going to take to change it.
The conversation covers HeartWorks' groundbreaking cell-based tissue engineering — including FDA-approved clinical trials to transplant patients' own heart muscle cells, grown from a skin biopsy, to literally rebuild damaged hearts. Tim's core philosophy: "Tissue is the issue."
They also discuss the CHD Co-op — a patient-owned data platform that matches families to clinical trials, and gives researchers a pre-qualified participant pool to dramatically accelerate timelines. Because your medical record belongs to you, not the hospital.
Key Topics Covered
- What HeartWorks does and how cell-based tissue engineering works
- Why "tissue is the issue" for congenital heart disease
- The three phases that shaped Tim's understanding of healthcare's failures
- The tension between evidence-based medicine and clinical innovation
- Risk tolerance, the "principle of uncertainty," and how families and care teams navigate clinical trials together
- Why moms are the most powerful force in moving the CHD community forward
- The role of parent engagement in hospital care and bedside decision-making
- How the CHD Co-op works and why patient-owned data changes everything
- HIPAA myths: you own your medical record, not the hospital
- How aggregated patient data can compress clinical trial timelines from years to weeks
- Equalizing access to cutting-edge care for patients in rural America
- Why thriving stories — not hospital stories — are the ones that move the CHD world forward
Keywords
congenital heart disease, CHD, HeartWorks, tissue engineering, heart muscle cells, cell therapy, FDA clinical trial, HLHS, hypoplastic left heart syndrome, in utero intervention, fetal cardiac intervention, CHD co-op, patient data, medical data ownership, HIPAA, clinical trial enrollment, heart parent, heart mom, cardiac surgery, patient advocacy, CHD community, Mayo Clinic, Fontan circulation, pulmonary hypertension, pediatric heart disease, congenital heart defect awareness, healthcare innovation, healthcare system reform, patient empowerment
Websites & Resources Referenced
- HeartWorks —WeBuildHearts.org
- The CHD Co-op — Available through HeartWorks; visit https://heartworksinc.org/co-op
Resources & Links:
- Stronger Hearts Foundation: strongerheartsfoundation.com
- Instagram: @strongerheartsfoundation
- 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.