31. My Top 5 Takeaways From Advocating for CHD on Capitol Hill

31. My Top 5 Takeaways From Advocating for CHD on Capitol Hill

31. My Top 5 Takeaways From Advocating For CHD on Capitol Hill Summary:  In this episode, Katelyn McMahan shares her top five takeaways from attending the National CHD Advocacy Summit in Washington, D.C. — her very first advocacy trip to Capitol Hill. As a member of the Every Hundredth Heart Coalition, Katelyn joined patients, heart parents, clinicians, researchers, and advocates from across the country with one shared goal: to elevate congenital heart disease as a national health policy priority. Whether you were able to join this year or not, this episode is packed with encouragement, insight, and a challenge to every CHD family to use their voice. In this episode: * Advocacy at local and national levels * Community strength and collaboration among foundations * Importance of staying informed on research and innovations * Storytelling as a tool for awareness and hope * The unstoppable nature of the CHD community Resources & Links: * Stronger Hearts Foundation: strongerheartsfoundation.com [https://strongerheartsfoundation.com] * Instagram: @strongerheartsfoundation [https://www.instagram.com/strongerheartsfoundation/] * Support Tiny Little Hearts [https://www.buzzsprout.com/2464576/support] — 10% of listener proceeds go to Stronger Hearts Foundation * Register for the Co-Op with HeartWorks [https://heartworksinc.org/co-op] * Every Hundredth Heart Coalition — everyhundredthheart.org [https://www.everyhundredthheart.org] * National CHD Advocacy Summit — hosted annually through the Every Hundredth Heart Coalition Let’s Connect! * Follow me on Instagram @tinylittleheartspodcast [https://www.instagram.com/tinylittleheartspodcast/] * Follow me on Substack at Tiny Little Hearts Substack [https://katelynmcmahan.substack.com/] * This episode was brought to you by the Pivot Ball Change [https://www.instagram.com/pivotballchange/] Network. Keywords: congenital heart disease advocacy · CHD advocacy summit · National CHD Advocacy Summit · Every Hundredth Heart Coalition · Capitol Hill advocacy · heart mom podcast · CHD awareness · congenital heart defect resources · CHD foundations · pediatric heart disease · heart warrior · CHD community · advocacy for rare disease · CHD research · heart parent · stronger hearts foundation · CHD storytelling · CHD funding · congenital heart disease statistics · Washington DC health advocacy Support the show [https://www.buzzsprout.com/2464576/support]

30. Congenital Heart Disease & A Broken System: The Innovation That's Changing Everything

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 [https://heartworksinc.org/] * The CHD Co-op — Available through HeartWorks; visit https://heartworksinc.org/co-op [https://heartworksinc.org/co-op] Resources & Links: * Stronger Hearts Foundation: strongerheartsfoundation.com [https://strongerheartsfoundation.com] * Instagram: @strongerheartsfoundation [https://www.instagram.com/strongerheartsfoundation/] * Support Tiny Little Hearts [https://www.buzzsprout.com/2464576/support] — 10% of listener proceeds go to Stronger Hearts Foundation * Use the code TINYLITTLEHEARTS for 10% off Better Days Co [https://betterdaysco.com/?srsltid=AfmBOooVK-_4sq99j1yvOCfdE07ciY6OEG-_Bb0USw1s_AE2lXkhkHqw] Let’s Connect! * Follow me on Instagram @tinylittleheartspodcast [https://www.instagram.com/tinylittleheartspodcast/] * Follow me on Substack at Tiny Little Hearts Substack [https://katelynmcmahan.substack.com/] This episode was brought to you by the Pivot Ball Change [https://www.instagram.com/pivotballchange/] Network. Support the show [https://www.buzzsprout.com/2464576/support]

29. A Mother’s Day Message for the Heart Moms

This Mother's Day episode is dedicated to every heart mom navigating the unique weight of medical motherhood and congenital heart disease parenting. Katelyn reflects on honoring the heart moms who came before us — including her own grandmother, an unsung CHD mom from the 1950s — and opens up about grieving the motherhood experience you didn't get when your child is medically complex. She gets honest about hitting rock bottom, the financial strain of leaving work to become a full-time caregiver for a medically complex child, and why self-care for heart moms doesn't have to be expensive — it just has to be intentional. Whether you're in a season of stability or deep in the thick of hospital life, pediatric heart surgery recovery, or CHD advocacy, this episode will remind you: you are an incredible mom, and your child is lucky to have you. In this episode: * Honoring the heart moms who came before us — including the OG CHD moms with no internet, no community, and no roadmap * How becoming a heart mom changes the lens through which you see motherhood * Grieving the pregnancy and motherhood experience you didn't get * The unique mental and physical exhaustion of being a medical parent * Hitting rock bottom and why asking for help is not weakness * The financial reality of leaving work to become a full-time caregiver * Practical, budget-friendly self-care tips for heart moms * How to communicate your needs so Mother's Day actually fills your cup * A reminder that you are enough — no matter what stage of the CHD journey you're in Resources & Links: * Stronger Hearts Foundation: strongerheartsfoundation.com [https://strongerheartsfoundation.com] * Instagram: @strongerheartsfoundation [https://www.instagram.com/strongerheartsfoundation/] * Support Tiny Little Hearts [https://www.buzzsprout.com/2464576/support] — 10% of listener proceeds go to Stronger Hearts Foundation * Use the code TINYLITTLEHEARTS for 10% off Better Days Co [https://betterdaysco.com/?srsltid=AfmBOooVK-_4sq99j1yvOCfdE07ciY6OEG-_Bb0USw1s_AE2lXkhkHqw] Let’s Connect! * Follow me on Instagram @tinylittleheartspodcast [https://www.instagram.com/tinylittleheartspodcast/] * Follow me on Substack at Tiny Little Hearts Substack [https://katelynmcmahan.substack.com/] * This episode was brought to you by the Pivot Ball Change [https://www.instagram.com/pivotballchange/] Network. Keywords: Heart mom / CHD mom, Medical motherhood, Congenital heart disease parenting, Medically complex child, Full-time caregiver for a medically complex child, Self-care for heart moms, NICU life, Pediatric heart surgery recovery, CHD advocacy Support the show [https://www.buzzsprout.com/2464576/support]

28. Mom Guilt After a CHD Diagnosis

Summary: Today, Katelyn sits down with Staci Reznik — mom to 10-year-old Davi, advocate, and someone who knows firsthand that no amount of medical expertise can prepare you for the moment you become a patient. Staci's story is uniquely layered: her husband is a cardiothoracic surgeon, and she spent years working on the facilities side of healthcare. Together, they had built their careers inside hospitals — and yet when Davi was diagnosed with Tetralogy of Fallot and Pulmonary Atresia in utero, they found themselves standing in completely unfamiliar territory. In this episode, Staci and Katelyn get into the raw, rarely-spoken feelings that so many heart moms carry silently after an in-utero diagnosis — the deep, gut-wrenching question of what have I done to cause this? They talk about the hidden weight of mom guilt, the emotional dark places that no one warns you about, the particular sting of postpartum recovery while your newborn is in the CVICU across town, and why surrounding yourself with people who truly get it can be the difference between surviving and thriving. This is a conversation about the things we think but don't say out loud. And it's one you won't want to miss. In this episode: * Receiving a CHD diagnosis in utero as a healthcare family — and why medical knowledge is a double-edged sword * The spiral of mom guilt: picking apart every decision, every meal, every moment before the diagnosis * Navigating postpartum recovery separated from your newborn in the CVICU * The exhausting question — "Is she cured?" — and how to answer it with grace * Finding your community and keeping your candle lit through the long road of CHD parenting * Davi's advocacy work and what the future might hold for this incredible young girl Connect with Staci Reznik * Instagram:@stacirez [https://www.instagram.com/stacirez/] Resources & Links: * Stronger Hearts Foundation: strongerheartsfoundation.com [https://strongerheartsfoundation.com] * Instagram: @strongerheartsfoundation [https://www.instagram.com/strongerheartsfoundation/] * Support Tiny Little Hearts [https://www.buzzsprout.com/2464576/support] — 10% of listener proceeds go to Stronger Hearts Foundation * Use the code TINYLITTLEHEARTS for 10% off Better Days Co [https://betterdaysco.com/?srsltid=AfmBOooVK-_4sq99j1yvOCfdE07ciY6OEG-_Bb0USw1s_AE2lXkhkHqw] Let’s Connect! * Follow me on Instagram @tinylittleheartspodcast [https://www.instagram.com/tinylittleheartspodcast/] * Follow me on Substack at Tiny Little Hearts Substack [https://katelynmcmahan.substack.com/] * This episode was brought to you by the Pivot Ball Change [https://www.instagram.com/pivotballchange/] Network. Keywords: congenital heart disease mom guilt, CHD in-utero diagnosis, Tetralogy of Fallot parent story, heart mom podcast, congenital heart defect diagnosis pregnancy, fetal echocardiogram experience, CVICU newborn, CHD advocacy, heart baby diagnosis emotional support, congenital heart disease pregnancy guilt, heart mom mental health, in-utero heart diagnosis support, CHD parent community, Tetralogy of Fallot and Pulmonary Atresia, postpartum CVICU separation, heart family stories, CHD awareness podcast, pediatric heart disease parent resources Support the show [https://www.buzzsprout.com/2464576/support]

27. Host to Host: Two Medical Mamas on NICU Life, CHD, and Milestones

This week on Tiny Little Hearts, Katelyn sits down with Alison Winter — host of the Trauma Mamas podcast — for a special host-to-host conversation. Both are navigating medically complex motherhood from different diagnoses (CHD and BPD), but their journeys share more in common than you'd expect. Alison's son Donny was born at 28 weeks, weighing one pound twelve ounces, and spent nearly two years in the hospital before coming home in October 2024. Katelyn's daughter Goldie, who has CHD, is now two and a half and finally in a beautiful season of stability. In this episode, they discuss: * Donny's journey with BPD and the connection between IUGR and severe lung disease * What it feels like to finally be home — and how "normal" gets redefined after years of hospital life * The milestone comparison trap: navigating jealousy and finding peace with your child's own timeline * How siblings of medically complex kids grow into extraordinary humans * Medical parenting as a first-time mom vs. a parent with previous children * What they wish they'd had during their hardest seasons — and the one thing well-meaning people say that doesn't actually help * Why healing often begins after you're finally safe * The power of cross-community connection for medical moms Connect with Alison & Trauma Mamas: * Instagram: @traumamamas [https://instagram.com]podcast * Facebook: The.Trauma.Mamas * Available on Spotify and Apple Podcasts Resources & Links: * Informed Pregnancy Podcast with Dr. Berlin * Facebook group: Nationwide Saved My BPD Baby * Stronger Hearts Foundation: strongerheartsfoundation.com [https://strongerheartsfoundation.com] * Instagram: @strongerheartsfoundation [https://www.instagram.com/strongerheartsfoundation/] * Support Tiny Little Hearts [https://www.buzzsprout.com/2464576/support] — 10% of listener proceeds go to Stronger Hearts Foundation * Use the code TINYLITTLEHEARTS for 10% off Better Days Co [https://betterdaysco.com/?srsltid=AfmBOooVK-_4sq99j1yvOCfdE07ciY6OEG-_Bb0USw1s_AE2lXkhkHqw] Let’s Connect! * Follow me on Instagram @tinylittleheartspodcast [https://www.instagram.com/tinylittleheartspodcast/] * Follow me on Substack at Tiny Little Hearts Substack [https://katelynmcmahan.substack.com/] * This episode was brought to you by the Pivot Ball Change [https://www.instagram.com/pivotballchange/] Network. Keywords: CHD, congenital heart defect, heart mom, NICU, NICU mom, NICU trauma, preemie, premature baby, BPD, bronchopulmonary dysplasia, medical mom, medically complex child, delayed milestones, NICU PTSD, pediatric heart disease, heart surgery, NICU community, IUGR, trach baby, NICU support, medical parenting, CHD awareness, NICU podcast, CHD podcast, feeding tube, g-tube, open heart surgery, PICU, heart warrior, micro preemie Support the show [https://www.buzzsprout.com/2464576/support]