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. 1d ago

    41. Adult CHD and a Life Without Limits: Fontan, Yoga, and Two Years in Spain

    Courtney Merhab was born with a hypoplastic left ventricle, transposition of the great arteries, and double outlet right ventricle. Today, she lives with Fontan circulation and a pacemaker. She is also a certified yoga teacher who spent two years living in Spain. Her life is built around caring for her whole body, not just her heart. In this episode, Courtney shares: How her parents balanced encouragement and caution while she was growing upWhy she was taught that her body would know its limitsHow yoga went from the worst class she’d ever taken to part of her purposeWhat it took to move abroad, even when her family was hesitantHow she prepared with her care team, medication, insurance, and a planWhy seeing a hepatologist changed how she thinks about her healthHow she blends Western medicine with nutrition, movement, sleep, and stress managementWhy balance matters, deep dish pizza includedKatelyn also reflects on how CHD guidance has changed since her dad was growing up, and what it means to raise Goldie differently. Together, they talk about what heart parents carry, and what it takes to let go. Know your body. Ask why. Work with your care team. Then go live your life. Sponsors & Show Support: Stronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationFollow Courtney on Instagram: @innerheartglowhttps://www.innerheartglow.com/Support Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationRegister for Move with Heart with Project 1 in 100Let’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: adult congenital heart disease, Fontan, single ventricle, CHD parenting, heart mom, living with CHD, yoga and CHD, whole-body wellness Support the show

  2. Oct 21

    40. Heart Mom with MS: Raising a Child with HLHS While Facing Her Own Diagnosis

    What happens when the caregiver needs care too? Mandy West is a working mom of two girls. Her youngest, Talia, was born with hypoplastic left heart syndrome. In December 2023, two things happened in the same month. Talia was diagnosed with mild heart failure after her Fontan, and Mandy was diagnosed with multiple sclerosis. In this episode, Mandy shares: Getting Talia’s HLHS diagnosis at the anatomy scanTalia’s three surgeries, including a Glenn recovery where Mandy watched her go into cardiac arrestHow the trauma came rushing back when the Fontan was scheduledThe symptoms that led to her own diagnosis: eye pain, facial numbness, vertigo, and memory lapsesWhy her mind wouldn’t let the MS diagnosis feel heavy at firstHow she talks to her daughters about MS and its invisible fatigueLearning that rest is not a luxuryHer advice for new heart moms: give yourself graceSponsors & Show Support: Stronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationFollow Mandy West on InstagramSupport Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationRegister for Move with Heart with Project 1 in 100Let’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

  3. Oct 7

    39. How to Prepare Your Child for Anesthesia, with Pediatric Anesthesiologist Doc JC

    Handing your child over before a procedure is one of the hardest moments a parent faces. Doc JC knows that moment from the other side. She is a pediatric anesthesiologist, a lifelong advocate for children, and the author of Adventures with Doc JC: The Unseen Planet, a children's book published in both English and Spanish that prepares kids for anesthesia. In her story, your child is not the patient. Your child is the superhero. Doc JC shares the two moments that shaped her work: hosting a five-year-old named Rosa during chemotherapy in Guatemala, and watching a hospital clown change everything for a frightened child. She explains why kids already know when we're nervous, why saying nothing is worse, and how to turn anxiety into excitement the night before. This one is for the whole home team. In this episode Why Doc JC began pairing medicine with storytellingThe "home team," and how children read the emotions of the adults around themThe amusement park question she asks parents the night before surgeryAnxiety and excitement as the same feeling, pointed in different directionsWhy she chose a galaxy: every child, everywhere, can look up and see itWhat anesthesiologists do, and the art in the specialtyKatelyn's own experience awake during Goldie's in-utero heart procedure at 23 weeksReading with siblings to help them name big feelingsWhy prepared, informed kids tend to recover betterA reminder for parents: you get to wear the cape tooSponsors & Show Support: Stronger Hearts Foundation: strongerheartsfoundation.comInstagram: @strongerheartsfoundationFollow Doc JC on InstagramSupport Tiny Little Hearts — 10% of listener proceeds go to Stronger Hearts FoundationRegister for Move with Heart  with Project 1 in 100Register for the Co-Op with HeartWorksPurchase Adventures with Doc JC: The Unseen PlanetLet’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

  4. 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

  5. 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

  6. 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

  7. 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

  8. 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

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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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