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. Sep 23

    38. Pediatric Cardiology NP to Heart Mom: Sheradon Waits Story form Both Sides of the Bed

    Summary: Sheridan Waits has spent 19 years as a pediatric cardiology nurse practitioner. She's cared for hundreds of heart families in the ICU. But 13 years into her career, everything changed when her own daughter, Mabry, was diagnosed in utero with heterotaxy — a rare condition including a right-sided stomach, double outlet right ventricle, TGA, multiple VSDs, and pulmonary stenosis. Overnight, Sheridan became both provider and heart mom. In this conversation, we talk about: The moment Sheridan's own fetal ultrasound turned into a diagnosis she recognized before the doctor even finished explaining itWhat it's like to sit in the same waiting rooms and hear the same conversations she'd walked past for years as a providerThe guilt of wondering if her own CHD history played a roleHow "small victories" look different when you've watched your child fight for every milestoneWhat she's learned about perspective — for families in the ICU for a day, and families there for monthsHow faith and medicine have worked together, not against each other, in Mabry's storyMabry today: six years old, playing soccer, chasing a backhand spring, and living fullyThis episode is for anyone who has ever sat bedside and wondered how life could look normal again — and for the providers who walk beside them every day. 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 SubstackKeywords: congenital heart disease, heterotaxy, double outlet right ventricle, transposition of the great arteries, VSD, ventricular septal defect, pulmonary stenosis, martial septal defect, fetal echocardiogram, fetal echo, biventricular repair, heart surgery recovery. Support the show

  2. Sep 9

    37. Living with HLHS as an Adult: Mental Health, Clinical Trials and Community with Kelly DiMaggio

    In this episode, Kelly DiMaggio joins me to talk about her life living with HLHS. Her mom didn’t receive a prenatal diagnosis. At one point, her doctors gave her 24 hours to live. Nearly four decades later, she's living a full life — married, working in finance, and dedicating her time to moving the CHD community forward. In this conversation, Kelly walks through her early medical history, the mental health weight of being "the strong one" in her family, her role in HeartWorks' groundbreaking stem cell clinical trial, and how she co-founded Project 1 in 100, a community-first movement connecting CHD patients and families across every diagnosis. This episode isn't about the heart defect — it's about the heart future. What's possible. What it looks like to grow up, grow older, and grow into a life this full. Connect with Kelly on Instagram: @KDimaggio1123Project 1 in 100: @project1in100Sponsors & 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, hlhs, hypoplastic left heart syndrome, mental health, toxic positivity, chd, heart community, clinical trials, stem cell research Support the show

  3. Aug 27

    36. Sending My CHD Kiddo to Preschool

    Katelyn shares her personal journey navigating her child's entry into preschool with a congenital heart defect, offering insights on choosing the right environment, advocacy, and supporting her child's growth. Chapters 00:00 Introduction to navigating preschool with a CHD child 02:36 Factors influencing preschool decision-making 04:21 School's approach to medically complex children 06:34 Researching and touring potential schools 08:37 Emotional journey and parental resilience 12:26 Communicating her child's medical background to teachers 15:26 Supporting her child's growth and independence 18:34 Ensuring safety and medical preparedness at school 21:00 Balancing advocacy with normal childhood experiences 23:51 Advocacy and community awareness 26:46 Reflecting on progress and future steps 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: CHD, preschool, advocacy, special needs, parenting, medical accommodations, education, community, empathy, inclusion Support the show

  4. Aug 14

    35. Cole Wieland on Life with HLHS and Creating Half Heart Mission

    35. Cole Wieland on Life with HLHS and Creating Half Heart Mission Two podcasters. Two heart journeys. One community. In this episode, Katelyn sits down with Cole Wieland, founder of Half Heart Mission and a 20-year-old living with hypoplastic left heart syndrome (HLHS). Cole and Katelyn have both built platforms inside the CHD community — his from the patient side, hers from the parent side — and this conversation is the collision of those two worlds. They trace Cole's path from a scary moment on a pickleball court to building a following of thousands sharing his story. They talk about Goldie's own HLHS diagnosis, the in-utero intervention that changed her trajectory, and how her case became Shone's complex instead. They get honest about the vulnerability and burnout that come with sharing a medical journey online, and why neither of them are chasing followers — just the right person, at the right time, who needs to hear it. And they close with their shared experience at the National CHD Advocacy Summit in DC, including Cole's interview with Senator Dick Durbin, and the piece of advice they'd both give a brand-new heart parent. If you've ever wondered what it looks like to turn a hard diagnosis into a platform for hope, this one's for you. Cole is a 20-year-old living with hypoplastic left heart syndrome (HLHS) and the founder of Half Heart Mission, a platform where he shares his journey with CHD to give patients and parents hope for the future. He's had three open-heart surgeries (Norwood, Glenn, Fontaine) and grew up playing competitive basketball and golf before starting his platform on TikTok, which has since grown into a large, engaged CHD community. Resources & Links Half Heart Mission: Instagram/TikTok @halfheartmissionSponsors & 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, chd, podcaster, content creators, hlhs, hypoplastic left heart syndrome,  Support the show

  5. Aug 5

    34. Season 2 Premiere: A Summer Recap & What's Ahead

    Season 2 is here! In this solo episode, Katelyn is back after a summer break to recap the season and share what's ahead for Tiny Little Hearts: CHD and Heart Mom Life. This summer marked the first time Katelyn and her family resumed their normal travel schedule since Goldie's diagnosis — a milestone that brought unexpected waves of reflection on the past three years. Katelyn shares what it felt like to pack for a trip with drastically fewer medical supplies than before, reconnecting with family who'd never met Goldie in person, and the gratitude that comes with a season of stability. Looking ahead, Katelyn previews what's coming in Season 2: conversations with authors and CHD foundations doing meaningful work in the advocacy space, and a new series exploring the "messy middle" of medical motherhood — the identity shifts, the fear that coexists with hope, and the reality of raising a child with CHD once the acute crises are behind you. Katelyn also shares a personal update: Goldie is starting preschool this fall, and new episodes will now release every other week. In this episode: A summer travel milestone, three years in the makingReflecting on stability, grief, and gratitude as a heart momA first look at Season 2: authors, foundations, and the messy middle of motherhoodWhat's next for the podcast scheduleSponsors & 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: Tiny Little Hearts podcast, CHD mom, heart mom, congenital heart disease podcast, CHD, traveling with a medically complex child, heart warrior milestones, CHD stability, medical motherhood, messy middle of motherhood, heart mom identity, CHD advocacy Support the show

  6. 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

  7. 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

  8. 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

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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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