Tiny Little Hearts Podcast: CHD and Heart Mom Life

Katelyn McMahan
  • 5.0 (16)
  • Medicine

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

  1. 2d ago

    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 levelsCommunity strength and collaboration among foundationsImportance of staying informed on research and innovationsStorytelling as a tool for awareness and hopeThe unstoppable nature of the CHD communityResources & Links: Stronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationSupport Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationRegister for the Co-Op with HeartWorksEvery Hundredth Heart Coalition — everyhundredthheart.orgNational CHD Advocacy Summit — hosted annually through the Every Hundredth Heart Coalition Let’s Connect! Follow me on Instagram @tinylittleheartspodcastFollow me on Substack at Tiny Little Hearts SubstackThis episode was brought to you by the Pivot Ball Change 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

    20 min

  2. May 13

    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 worksWhy "tissue is the issue" for congenital heart diseaseThe three phases that shaped Tim's understanding of healthcare's failuresThe tension between evidence-based medicine and clinical innovationRisk tolerance, the "principle of uncertainty," and how families and care teams navigate clinical trials togetherWhy moms are the most powerful force in moving the CHD community forwardThe role of parent engagement in hospital care and bedside decision-makingHow the CHD Co-op works and why patient-owned data changes everythingHIPAA myths: you own your medical record, not the hospitalHow aggregated patient data can compress clinical trial timelines from years to weeksEqualizing access to cutting-edge care for patients in rural AmericaWhy thriving stories — not hospital stories — are the ones that move the CHD world forwardKeywords 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.orgThe CHD Co-op — Available through HeartWorks; visit https://heartworksinc.org/co-opResources & Links: Stronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationSupport Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationUse the code TINYLITTLEHEARTS for 10% off Better Days CoLet’s Connect! Follow me on Instagram @tinylittleheartspodcastFollow me on Substack at Tiny Little Hearts SubstackThis episode was brought to you by the Pivot Ball Change Network. Support the show

    48 min

  3. May 6

    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 roadmapHow becoming a heart mom changes the lens through which you see motherhoodGrieving the pregnancy and motherhood experience you didn't getThe unique mental and physical exhaustion of being a medical parentHitting rock bottom and why asking for help is not weaknessThe financial reality of leaving work to become a full-time caregiverPractical, budget-friendly self-care tips for heart momsHow to communicate your needs so Mother's Day actually fills your cupA reminder that you are enough — no matter what stage of the CHD journey you're inResources & Links: Stronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationSupport Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationUse the code TINYLITTLEHEARTS for 10% off Better Days Co Let’s Connect! Follow me on Instagram @tinylittleheartspodcastFollow me on Substack at Tiny Little Hearts SubstackThis episode was brought to you by the Pivot Ball Change 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

    17 min

  4. Apr 29

    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 swordThe spiral of mom guilt: picking apart every decision, every meal, every moment before the diagnosisNavigating postpartum recovery separated from your newborn in the CVICUThe exhausting question — "Is she cured?" — and how to answer it with graceFinding your community and keeping your candle lit through the long road of CHD parentingDavi's advocacy work and what the future might hold for this incredible young girlConnect with Staci Reznik Instagram:@stacirez Resources & Links: Stronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationSupport Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationUse the code TINYLITTLEHEARTS for 10% off Better Days Co Let’s Connect! Follow me on Instagram @tinylittleheartspodcastFollow me on Substack at Tiny Little Hearts SubstackThis episode was brought to you by the Pivot Ball Change 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

    56 min

  5. Apr 22

    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 diseaseWhat it feels like to finally be home — and how "normal" gets redefined after years of hospital lifeThe milestone comparison trap: navigating jealousy and finding peace with your child's own timelineHow siblings of medically complex kids grow into extraordinary humansMedical parenting as a first-time mom vs. a parent with previous childrenWhat they wish they'd had during their hardest seasons — and the one thing well-meaning people say that doesn't actually helpWhy healing often begins after you're finally safeThe power of cross-community connection for medical momsConnect with Alison & Trauma Mamas: Instagram: @traumamamaspodcastFacebook: The.Trauma.MamasAvailable on Spotify and Apple PodcastsResources & Links: Informed Pregnancy Podcast with Dr. BerlinFacebook group: Nationwide Saved My BPD BabyStronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationSupport Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationUse the code TINYLITTLEHEARTS for 10% off Better Days Co Let’s Connect! Follow me on Instagram @tinylittleheartspodcastFollow me on Substack at Tiny Little Hearts SubstackThis episode was brought to you by the Pivot Ball Change 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

    45 min

  6. Apr 15

    26. Grieving the Pregnancy You Didn't Get: CHD, Faith, and the Feelings Nobody Talks About

    What happens when the pregnancy you dreamed of looks nothing like the one you're living? In this solo episode, Katelyn gets honest about something that doesn't get talked about enough in the medical motherhood world — grieving the pregnancy and birth you didn't get, even when your baby is still here. After receiving her daughter Goldie's congenital heart disease (CHD) diagnosis in utero at 18 weeks, Katelyn found herself grieving a life she had already started imagining. The babywearing. The flexible third baby who would just come along for the ride. The blissful, uncomplicated pregnancy she was so excited to soak in, knowing Goldie would be her last. This episode is for the mom who has been told to "just trust God" one too many times and felt more alone because of it. It's for the mom who is mentally tallying up everything her child will and won't experience. It's for anyone who has closed a nursery door and couldn't explain why — but needed to. In this episode we talk about What it actually means to grieve a pregnancy when your baby is still alive — and why that grief is real, valid, and not a reflection of your faithHow Maeve's PICU stays first introduced Katelyn to medical parenting and the advocacy skills that would prepare her for Goldie's journeyThe moment Goldie's CHD diagnosis changed everything — and how Katelyn and her husband shut the nursery door for four weeksThe difference between ambiguous loss and grieving death, and why one feels more taboo to voice out loudWhy well-meaning messages of "relentless hope" and performative faith talk can actually cause harm and deepen isolationHow to offer support to a family walking through a life-altering diagnosis — and what to say insteadThe perspective that comes on the other side of grief, and why you have to walk through it to find itSupport the Show! Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationResources & Links: Stronger Hearts Foundation: strongerheartsfoundation.comUse the code TINYLITTLEHEARTS for 10% off Better Days CoLet’s Connect! Follow me on Instagram @tinylittleheartspodcastFollow me on Substack at Tiny Little Hearts SubstackThis episode was brought to you by the Pivot Ball Change Network.Keywords: CHD diagnosis, congenital heart disease pregnancy, grieving pregnancy loss, medical motherhood, NICU mom, prenatal diagnosis grief, ambiguous loss, postpartum mental health, PICU mom, hypoplastic left heart syndrome, CHD mom community, faith and grief, medical mom podcast Support the show

    24 min

  7. Apr 8

    25. It’s Not Your Season…Right Now: Half a Heart With a Full Life

    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 joyThe 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 pointTalking 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 kidPreserving 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-FontanProject 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 prepareFinding 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 GastonInstagram: Project1in100Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationUse the code TINYLITTLEHEARTS for 10% off Better Days Co Let’s Connect! Follow me on Instagram @tinylittleheartspodcastFollow me on Substack at Tiny Little Hearts SubstackThis 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 Support the show

    39 min

  8. Apr 1

    24. More Than CHD: A 13-Year Friendship Between a Heart Mom and Adult CHDer

    In this episode, I’m joined by Lauren and Lauren. One, a heart mom, and the other, an adult CHDer. For Lauren Watson and Lauren Bednarz, that one message 13 years ago became the foundation of one of the deepest friendships either of them has ever known. We talk about how they found each other, what it looked like to build a real friendship virtually before it was "normal" to do so, and why CHD brought them together but doesn't define what keeps them close. Lauren Watson is a heart mom to Addie, who has tricuspid atresia and a hypoplastic right heart, and has been walking the CHD journey since Addie's diagnosis at her 20-week anatomy scan. Lauren Bednarz is a 38-year-old adult CHDer — also with tricuspid atresia and a hypoplastic right heart — and one of the most recognized advocates in the CHD community, having been in this space for over 18 years. Their friendship is the kind this community makes possible: born out of shared diagnosis, deepened through grief and hard seasons of life, and now one of those rare friendships where CHD doesn't even come up in most conversations. This episode is for anyone who has wondered whether the friendships you find in this community can actually go the distance. They can. And this one is proof. Tiny Little Hearts is hosted by Katelyn McMahan. A portion of listener support goes to Stronger Hearts Foundation. If this episode resonated with you, please share it with another heart family who might need it today. Support this show: Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationResources & Links: Connect with Lauren Bednarz on Instagram @laurenb_hopefulheartStronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationUse the code TINYLITTLEHEARTS for 10% off Better Days Co Let’s Connect! Follow me on Instagram @tinylittleheartspodcastFollow me on Substack at Tiny Little Hearts SubstackThis episode was brought to you by the Pivot Ball Change Network.Keywords: congenital heart disease friendship, CHD community, adult CHD, heart mom, tricuspid atresia, hypoplastic right heart, Fontan, heart warrior, CHD advocacy, Lauren Bednarz, CHD support, heart parent community, Tiny Little Hearts podcast Support the show

    39 min
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About

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

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