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. Jun 10

    33. One Year of Tiny Little Hearts Podcast: CHD and Heart Mom Life

    If you're a heart parent navigating congenital heart disease, you know that the journey is rarely a straight line — and neither is building a community around it. In this special solo episode, Katelyn closes out Season 1 of Tiny Little Hearts with a heartfelt thank you to the CHD parenting community that has grown around this show. Over the past year, Tiny Little Hearts has become a space where congenital heart disease families can feel less alone, more informed, and genuinely supported. From vulnerable guest conversations to listener stories that have poured in from heart parents across the country, Season 1 has been more than Katelyn ever hoped for when she hit record on that first episode. In this episode, Katelyn shares: A reflection on Season 1 — the guests, the topics, and the CHD parent community moments that meant the mostA personal and honest update on why she's pausing new episode releases for the summer — and how editing last week's episode with Katie Taylor of Child Life on Call about medical parent emotional burnout made her stop and listen to her own instinctsWhat's coming in Season 2, launching in early August — including deeper conversations, more expert voices, and new topics for heart familiesHow you can support the show during the break (hint: share it with a CHD parent who needs it)Whether you're newly diagnosed, years into your congenital heart disease journey, or somewhere in the messy middle — this episode is a reminder that you are not walking this road alone. Sponsors & Show Support: Stronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationSupport Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationRegister for the Co-Op with HeartWorks 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,caregiver burnout, medical parent burnout, child life specialist, medically complex child, hospital parent support, caregiver self-care Support the show

    11 min

  2. Jun 3

    32. Caregiver Burnout in Medical Parents: How To Recognize It Before You Crash with Certified Child Life Specialist Katie Taylor

    Summary:  In this episode, Katelyn sits down with Katie Taylor — certified child life specialist, co-founder and CEO of Child Life On Call, author, speaker, and host of Inside the Children's Hospital podcast — for a deeply honest conversation about caregiver burnout. Katie has spent over 15 years working at the bedside of children's hospitals and supporting families through some of their hardest moments, and she brings both clinical expertise and genuine warmth to this topic that doesn't get nearly enough airtime. In this episode: What caregiver burnout actually looks like from the bedside — and why it's so hard to recognize when you're in itThe moment a nurse gave Katelyn and her husband permission to rest during one of Goldie's hospitalizations — and what it taught her about sustainable caregivingWhy the transition home from the hospital can be more overwhelming than the hospitalization itselfThe difference between traditional "treat yourself" self-care and what actually works — including the concept of "mothering yourself" (backed by research!)Why phrases like "you're so strong" can feel isolating for medical parents, and how that experience evolves over timeKatie's three-pillar framework from trauma-informed care: safety, community, and voice — and how to use it to ride the burnout waveResources & Links: Follow Katie Taylor on Instagram @childlifeoncallListen to Katie’s Podcast: Inside The Children's HospitalJen Hatmaker (author, Austin TX) and her concept of "mothering yourself"The Rare Life podcast with MadeleineOnce Upon a Gene podcast with EffieWe Are Brave Together  with JessicaRaising Disabled podcastResearch Statement: Studies consistently show that brief moments of self-care throughout the day are more sustainable than waiting for large chunks of time that may never come.Article: Yilmaz Balban, M., Neri, E., Kogon, M. M., Weed, L., Nouriani, B., Jo, B., Holl, G., Zeitzer, J. M., Spiegel, D., & Huberman, A. D. (2023). Brief structured respiration practices enhance mood and reduce physiological arousal. Cell Reports Medicine, 4(1), 100895. https://doi.org/10.1016/j.xcrm.2022.100895 Sponsors & Show Support: Stronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationSupport Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationRegister for the Co-Op with HeartWorks 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,caregiver burnout, medical parent burnout, child life specialist, medically complex child, hospital parent support, caregiver self-care Support the show

    39 min

  3. May 27

    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

  4. 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

  5. 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

  6. 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

  7. 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

  8. 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
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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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