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Explorez tous les épisodes du podcast Tiny Little Hearts Podcast: CHD and Heart Mom Life

Plongez dans la liste complète des épisodes de Tiny Little Hearts Podcast: CHD and Heart Mom Life. Chaque épisode est catalogué accompagné de descriptions détaillées, ce qui facilite la recherche et l'exploration de sujets spécifiques. Suivez tous les épisodes de votre podcast préféré et ne manquez aucun contenu pertinent.

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1–39 of 39

TitreDateDurée
38. Pediatric Cardiology NP to Heart Mom: Sheradon Waits Story form Both Sides of the Bed23 sept. 202600:44:50

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 it
  • What it's like to sit in the same waiting rooms and hear the same conversations she'd walked past for years as a provider
  • The guilt of wondering if her own CHD history played a role
  • How "small victories" look different when you've watched your child fight for every milestone
  • What she's learned about perspective — for families in the ICU for a day, and families there for months
  • How faith and medicine have worked together, not against each other, in Mabry's story
  • Mabry today: six years old, playing soccer, chasing a backhand spring, and living fully

This 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:


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Keywords: 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.


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37. Living with HLHS as an Adult: Mental Health, Clinical Trials and Community with Kelly DiMaggio09 sept. 202600:46:53

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.

Sponsors & Show Support:


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Keywords: congenital heart disease, hlhs, hypoplastic left heart syndrome, mental health, toxic positivity, chd, heart community, clinical trials, stem cell research


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36. Sending My CHD Kiddo to Preschool27 août 202600:35:45

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:


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Keywords: CHD, preschool, advocacy, special needs, parenting, medical accommodations, education, community, empathy, inclusion





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35. Cole Wieland on Life with HLHS and Creating Half Heart Mission14 août 202600:45:41

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

Sponsors & Show Support:


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Keywords: congenital heart disease, chd, podcaster, content creators, hlhs, hypoplastic left heart syndrome, 


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34. Season 2 Premiere: A Summer Recap & What's Ahead05 août 202600:12:23

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 making
  • Reflecting on stability, grief, and gratitude as a heart mom
  • A first look at Season 2: authors, foundations, and the messy middle of motherhood
  • What's next for the podcast schedule

Sponsors & Show Support:


Let’s Connect!

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


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33. One Year of Tiny Little Hearts Podcast: CHD and Heart Mom Life10 juin 202600:11:28

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 most
  • A 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 instincts
  • What's coming in Season 2, launching in early August — including deeper conversations, more expert voices, and new topics for heart families
  • How 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:


Let’s Connect!

Keywords: congenital heart disease,caregiver burnout, medical parent burnout, child life specialist, medically complex child, hospital parent support, caregiver self-care

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32. Caregiver Burnout in Medical Parents: How To Recognize It Before You Crash with Certified Child Life Specialist Katie Taylor03 juin 202600:39:03

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 it
  • The moment a nurse gave Katelyn and her husband permission to rest during one of Goldie's hospitalizations — and what it taught her about sustainable caregiving
  • Why the transition home from the hospital can be more overwhelming than the hospitalization itself
  • The 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 time
  • Katie's three-pillar framework from trauma-informed care: safety, community, and voice — and how to use it to ride the burnout wave

Resources & Links:

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:


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Keywords: congenital heart disease,caregiver burnout, medical parent burnout, child life specialist, medically complex child, hospital parent support, caregiver self-care



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31. My Top 5 Takeaways From Advocating for CHD on Capitol Hill27 mai 202600:20:07

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:



Let’s Connect!

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



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30. Congenital Heart Disease & A Broken System: The Innovation That's Changing Everything13 mai 202600:47:47

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

Resources & Links:

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This episode was brought to you by the Pivot Ball Change Network.

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29. A Mother’s Day Message for the Heart Moms06 mai 202600:17:02

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:


Let’s Connect!

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


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28. Mom Guilt After a CHD Diagnosis29 avr. 202600:56:21

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


Resources & Links:


Let’s Connect!

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



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27. Host to Host: Two Medical Mamas on NICU Life, CHD, and Milestones22 avr. 202600:44:50

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: @traumamamaspodcast
  • Facebook: The.Trauma.Mamas
  • Available on Spotify and Apple Podcasts

Resources & Links:


Let’s Connect!

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


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26. Grieving the Pregnancy You Didn't Get: CHD, Faith, and the Feelings Nobody Talks About15 avr. 202600:23:30

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 faith
  • How Maeve's PICU stays first introduced Katelyn to medical parenting and the advocacy skills that would prepare her for Goldie's journey
  • The moment Goldie's CHD diagnosis changed everything — and how Katelyn and her husband shut the nursery door for four weeks
  • The difference between ambiguous loss and grieving death, and why one feels more taboo to voice out loud
  • Why well-meaning messages of "relentless hope" and performative faith talk can actually cause harm and deepen isolation
  • How to offer support to a family walking through a life-altering diagnosis — and what to say instead
  • The perspective that comes on the other side of grief, and why you have to walk through it to find it

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Resources & Links:

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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

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25. It’s Not Your Season…Right Now: Half a Heart With a Full Life08 avr. 202600:38:53

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 joy
  • The 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 point
  • Talking 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 kid
  • Preserving 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-Fontan
  • Project 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 prepare
  • Finding 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:


Let’s Connect!

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


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24. More Than CHD: A 13-Year Friendship Between a Heart Mom and Adult CHDer01 avr. 202600:38:51

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.

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Resources & Links:


Let’s Connect!

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


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23. Stronger Hearts Foundation: Surgery Support Every CHD Family Needs25 mars 202600:28:35

Summary:

Every CHD parent remembers the moment the world stopped. The diagnosis. The surgery date. The waiting room. But what happens to the family holding it all together while their child is in the OR?

In this episode, Katelyn sits down with Conner Hill, co-founder of Stronger Hearts Foundation, to talk about his son Dawson's diagnosis of Hypoplastic Left Heart Syndrome (HLHS) at 20 weeks, the 100+ inpatient days that followed, and how one family's experience navigating the gaps in the CHD support system became a foundation that is already changing lives.

From emergency housing assistance and day-of-surgery care packages to a community built on the belief that no CHD family should walk this road alone, Stronger Hearts Foundation is filling a critical gap that too many families don't know exists until they're already in crisis.

Katelyn also shares exciting news: she and her husband Stephen have joined Stronger Hearts Foundation as Managing Directors, leading West Coast expansion efforts — and 10% of all Tiny Little Hearts listener support goes directly to Stronger Hearts Foundation.

In This Episode:

  • Dawson's HLHS diagnosis at the 20-week anatomy scan and the overwhelming first 24 hours
  • Navigating the Norwood, a Christmas Day discharge, two emergency flights during the interstage, and the Glenn procedure
  • The unspoken logistics of CHD life — Airbnbs, hotel bills, waitlists, and coordinating family across state lines
  • Why Ronald McDonald House isn't always available immediately and the gap Stronger Hearts was built to fill
  • How Conner designed the foundation's logo from Dawson's hospital room as a way to cope
  • Getting 501(c)3 approval in just two months — and hitting the ground running
  • The first Instagram DM from a care package recipient that made Conner cry in his kitchen
  • Being invited to the CNOC cardiology conference and overcoming imposter syndrome
  • What's next for Stronger Hearts Foundation — nurse incentive programs, improved single-ventricle monitoring, and national expansion
  • Katelyn and Stephen joining as Managing Directors and the West Coast presence they're building together

Resources & Links:


Let’s Connect!

Keywords: CHD financial assistance, congenital heart disease support, HLHS family resources, CHD housing help, day of surgery care packages, Stronger Hearts Foundation, hypoplastic left heart syndrome, CHD nonprofit, cardiac surgery family support, CHD community, interstage monitoring, Fontan surgery, CHD advocacy


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22. The Sibling Side of CHD: From Lila’s Heart11 mars 202600:11:26

Summary

In this episode, Katelyn has a conversation with her 9 year old daughter, Lila, who shares about her experience being a sibling of a child with heart problems. She shares insights on family resilience, emotional processing and caring for her sister, Goldie. Lila gives insight to the emotional impact it had on her and her other sister Maeve, as well as what was helpful for them when processing and understanding what was going on with their new baby sister. Katelyn shares about giving Lila a Gizmo Watch for a line of communication that she could message at any time when needing to send a message or hear from mom or dad when they were away. They also talk about the ways Lila has learned to help care for her medically complex sister. This episode highlights how open communication helps children process difficult situations, how siblings can be brave and caring and provide emotional support for each other, and how involving children in care routines fosters understanding and connection. 


Use the code TINYLITTLEHEARTS for 10% off Better Days Co

Ryan Ellis- Gonna Be Alright

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Follow me on Substack at Tiny Little Hearts Substack


This episode was brought to you by the Pivot Ball Change Network.

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21. How To Prepare For a Cardiology Appointment04 mars 202600:10:08

Summary

In this conversation, Katelyn discusses how to prepare for cardiology appointments, focusing on the importance of being armed with questions and emotional readiness. She emphasizes the need for preparation in three key areas: understanding changes in health, logistical arrangements for the appointment, and emotional readiness to advocate for oneself or your child. Katelyn also shares practical tips and resources to help parents navigate these appointments with confidence and shares a document that is a Cardiology Appointment Checklist. 

Cardiology Appointment Checklist


Use the code TINYLITTLEHEARTS for 10% off Better Days Co


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Follow me on Substack at Tiny Little Hearts Substack


This episode was brought to you by the Pivot Ball Change Network.

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20. Caregiver Burnout: The Raw Reality25 févr. 202600:19:32

In this episode, Katelyn McMahan discusses the often-overlooked topic of caregiver burnout, sharing her personal experiences and insights. She emphasizes the commonality of burnout among caregivers, the emotional toll it takes, and the importance of recognizing its triggers and signs. Katelyn offers practical strategies for self-care and highlights the significance of building a supportive community to navigate the challenges of caregiving. Ultimately, she encourages listeners to prioritize their own needs while balancing their roles as caregivers.

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19: How We Kept Our Marriage Strong When Statistics Told Us Otherwise11 févr. 202600:31:25

In this conversation, Katelyn McMahan and her husband discuss the challenges of maintaining a strong marriage while navigating the complexities of raising medically complex children. They share personal experiences, strategies for communication, the importance of support systems, and the necessity of prioritizing both individual and marital well-being amidst caregiver burnout. The discussion emphasizes the significance of teamwork, asking for help, and finding moments of connection to strengthen their relationship during difficult times.


Psychology Today Article



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18: Meadow and Her Four-Leaf Clover Heart04 févr. 202600:27:06

In this episode, host Katelyn McMahan welcomes Sarah Boes to celebrate the release of Sarah's children's book, 'Meadow and Her Four Leaf Clover Heart' launching February 8th, 2026. Together, they explore how the right story at the right time can truly change everything for a child navigating life with a congenital heart defect. Sarah opens up about the inspiration behind her book and the special meaning of the four leaf clover—a symbol of hope and uniqueness that mirrors the journey of children with CHD. Their conversation illuminates how positive, empowering narratives can help our little ones see their hearts not as something broken, but as something extraordinary. They also share the deep impact that community, connection, and advocacy have had in the CHD world, reminding us that no family has to walk this path alone. Sarah shares about a new coalition that has formed called Every 100th Heart.


Follow Sarah Michelle Boes on Instagram

Meadow and Her Four-Leaf Clover Heart can be purchased at:

Amazon

Barnes & Noble

Booktopia


Every 100th Heart 


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17. Parenting Special Kids Network: Turning Experience into Support28 janv. 202600:36:17

In this episode, Katelyn McMahan speaks with Jeff Thibault, co-founder of Parenting Special Kids Network, a nonprofit organization dedicated to supporting families raising children with disabilities in Arizona. Jeff shares his personal journey, detailing the challenges he and his wife Debbie faced while raising their daughter Claire, who has an intellectual disability and anxiety disorder. Their experiences led them to create a supportive community for other parents navigating similar challenges, offering resources, guidance, and a space for shared experiences.

Jeff discusses the importance of community and connection among parents, emphasizing the need for support groups where families can share their stories and strategies. He highlights the various services offered by Parenting Special Kids Network, including one-on-one coaching, assistance with navigating state and federal resources, and the development of a comprehensive guidebook for families. The conversation underscores the complexities of raising a child with disabilities and the critical role that support networks play in alleviating the burdens faced by these families.


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Learn more about Parenting Special Kids Network

Guillermo's Story


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16. Lindsay’s Transplant Story: Where Grief and Joy Coexist 21 janv. 202600:44:58

Lindsay Alano and her mother Susan Barth share their journey through congenital heart disease, the challenges of growing up with a serious medical condition, and the transformative experience of undergoing a heart and liver transplant as an adult. Lindsay shares about an experience in college what turned out to be the catalyst for her transplant journey. They discuss the importance of family support, the emotional complexities of being a transplant recipient, and the significance of being your own self advocate in healthcare. Lindsay reflects on her experiences, the impact of her donor, and recognizing how grief and joy can coexist at the same time. Lindsay shares about the lessons learned about resilience and living life fully despite health challenges.

Links:

Better Days Co.: Use code ‘TINYLITTLEHEARS’ for 10% off: https://betterdaysco.com/?sca_ref=9353959.TCfBLni4cA&utm_source=referral&utm_medium=influencer&utm_campaign=new-affiliates&utm_content=Aaron-Wheeler


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15. 2026: What I'm Continuing and What I'm Leaving Behind14 janv. 202600:19:04

In this conversation, Katelyn discusses some of the things she has thought about continuing in the new year, and some things that she hopes to leave behind. She reflects on her experiences as a parent of a medically complex child, particularly during the holiday season. She discusses the importance of resilience, community support, and the need to embrace small joys while navigating the challenges of parenting a child with heart disease. Katelyn emphasizes the significance of leaving behind the comparison trap, releasing guilt over uncontrollable circumstances, and the unrealistic expectation of bouncing back to a previous normal. She encourages listeners to take one step at a time and find their own rhythm in this unique journey.

00:00 Reflections on the Holiday Season

04:36 Embracing Resilience and Community

09:38 Leaving Behind the Comparison Trap

12:44 Releasing Guilt and Expectations

17:23 Navigating the Journey Forward


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14. Hearts Like Mine: Choosing How You View Your Story24 nov. 202500:23:50

In this powerful episode, Katelyn sits down with Garrett Deiro, a congenital heart disease (CHD) survivor who has a diagnosis of Tetralogy of Fallot and founder of Hearts Like Mine blog. Garrett opens up about his journey through four open heart surgeries, including a life-threatening emergency procedure at age 13 that profoundly shaped his life and years later, has been an instrumental aspect of pursuing his path toward medical school.

For all you boy moms and dads, this conversation offers a male perspective on growing up with CHD, navigating the challenges of adolescence with a heart condition, and choosing to view adversity as a catalyst for purpose rather than a limitation.

Key Topics Discussed:

  • The reality of childhood surgeries and what it's like to remember your first major procedure
  • How a medical emergency became a turning point
  • Processing trauma and choosing your perspective
  • Not letting CHD define your limitations
  • Staying active and participating in sports with a heart condition
  • The evolution from "why me?" to finding purpose
  • Creating connection in the CHD community

Hearts Like Mine Blog

Follow Garret on Instagram at @hearts.like.mine.chd


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13. When “Fed is Best”- Our Feeding Journey From Tube to Table10 nov. 202500:22:26

In this personal episode, host Katelyn shares details about the feeding journey- from challenges to small wins with her daughter Goldie, who was born with congenital heart defects (CHDs). From navigating tube dependence to completing an intensive feeding therapy program, Katelyn opens up about one of the most isolating aspects of caring for a medically complex child. If you're a heart parent or anyone dealing with pediatric feeding challenges, this episode offers hope, practical insights, and the reminder that you're not alone through any of these isolating tasks you now assume as a medical parent. Katelyn discusses how the prenatal diagnosis shaped the feeding plans, especially having struggled through the societal demands of “breast is best” with her oldest daughter and talks through the evolution of Goldie’s feeding and nutrition journey– from tube to completing an intensive feeding therapy program that kick started the tube weaning process. She talks about setting appropriate expectations for yourself and your child, what false hopes she experienced throughout the beginning stages of a feeding tube, and how she shaped her perspectives and managed expectations along the way. 


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12. From Patients, For Patients: How EmpowerMyCH is Transforming the CHD Journey27 oct. 202500:32:51

This episode could truly be a game changer for our CHD community. As parents and patients, we spend so much time navigating the challenges of congenital heart disease in the present — managing appointments, procedures, and uncertainty. But many of us also think about the future. How can we help our children grow into adults who confidently manage their own care? How can adult patients find the resources they need to stay informed and supported through every stage of their journey?

Today, we’re highlighting a project that’s answering those questions in groundbreaking ways: EmpowerMyCH, a web and mobile platform created by the CHD community, for the CHD community.

Joining me for this conversation are three remarkable individuals from the EmpowerMyCH team (full bios at the bottom):

  • Dr. Anushree (Anu) Agarwal, a cardiologist specializing in adult congenital heart disease and cardio-obstetrics at UCSF Health, and principal investigator of the EmpowerMyCH study.


  • Lindsay Alano, the Patient Engagement Lead for EmpowerMyCH and a lifelong CHD advocate living with complex heart defects.


  • Joe Valente, a board-certified patient advocate, researcher, and lifelong CHD patient whose personal experience drives his passion for empowering others.


Together, we explore how EmpowerMyCH came to life, what inspired its creation, and how it’s designed to help CHD patients and families navigate the healthcare system with confidence. Dr. Agarwal shares her vision for improving care through technology and community collaboration. Joe dives into the digital medical passport, a feature designed to help patients manage records, connect with their providers, and take ownership of their medical history. Lindsay offers an honest look at the challenges of transitioning from pediatric to adult CHD care — and how EmpowerMyCH is working to make that process smoother and more supported.

Joe also shares a deeply personal story from his own childhood that illustrates the power of helping children understand their heart condition early on — a small but meaningful step toward lifelong empowerment.

As we close, Lindsay describes some of the outreach efforts already in place to expand EmpowerMyCH’s reach and connect more CHD patients and families with this vital resource. This project is just getting started, but its impact is already clear: it’s building stronger bridges between patients, families, and care teams — and helping every CHD voice be heard.

Links:

Visit https://www.empowermych.org/ to learn more.

Better Days Co.: Use code ‘TINYLITTLEHEARS’ for 10% off:

www.betterdaysco.com


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11. Hospital to Home: The Loneliness After Discharge13 oct. 202500:14:57

In this solo episode, Katelyn opens up about a topic that many medical moms experience but rarely talk about: the profound isolation that comes with transitioning from hospital to home. While everyone celebrates discharge day, the reality of caring for a medically complex child at home can feel incredibly lonely—even when surrounded by support.

Katelyn shares her personal experience navigating life after Goldie's heart surgeries, from managing continuous tube feeds to accepting that recovery doesn't mean perfection. She discusses why the transition home can feel even more isolating than being inpatient, the mixed emotions of missing hospital staff support, and the importance of giving yourself grace during this challenging period.

If you're newly home from a hospital stay or struggling with the weight of being your child's 24/7 caregiver, this episode is for you.


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10. A Cure for Cora: From HLHS Diagnosis to Delivering Hope with Community and Advocacy15 sept. 202500:39:18

In this conversation, Katelyn McMahan speaks with Allison Millar, a fellow heart mom, about her daughter Cora's journey with hypoplastic left heart syndrome (HLHS). Cora is now three and a half, and has undergone two surgeries. Allison and Katelyn discuss the challenges of navigating interstage care, the emotional weight of a prenatal diagnosis, and the importance of community support. Allison and her husband had to plan to deliver and relocate to a different state for Cora’s surgical care, and Allison shares the process of navigating those decisions, until she went into early term labor and the decision was made for her. Allison shares her family's advocacy efforts, including fundraising events to support other families affected by congenital heart disease and the significance of raising awareness for research and better outcomes. She shares about the annual bike ride her family started, along with the development of A Cure For Cora, to impact the advocacy and awareness efforts. Katelyn and Allison talk about how connection with other heart families can provide comfort and understanding, as it is often a very lonely journey at first. Every small win in a child’s health journey is significant, and the power of community support is invaluable. 



Use the code TINYLITTLEHEARTS for 10% off Better Days Co


Follow Allison on Instagram


Read more about Cora’s Story


Learn more about Heart Works


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9. Heart Like a Mother: A CHD Journey to Community Mission with Amelia Woods01 sept. 202500:27:17

In this conversation, Katelyn McMahan speaks with Amelia Woods, a fellow heart mom and founder of Heart Like a Mother. They discuss Amelia's son Henderson's journey with congenital heart defects, the importance of community support for parents navigating medical motherhood, and the creation of her children's book, 'A Boy Born Brave.' Amelia shares her mission to advocate for families facing similar challenges living in locations where you have to travel for surgical intervention. She talks about the significance of emotional and financial support during difficult times, which led to her mission in creating the Heart Like a Mother Foundation, that provides resources for families in their surrounding area and community to help cover gift cards for travel expenses, food or other resources for families in similar situations. 


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Heart Like A Mother


Purchase The Boy Born Brave here


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8. The Quarterback of Complex Care: How Primary Care is More Than Check-Ups with Dr. Jennifer Cropp18 août 202500:33:40

In this conversation, host Katelyn McMahan speaks with Dr. Jennifer Cropp about her personal journey with her son's heart condition and the importance of building connections in pediatric care. They discuss navigating the complexities of healthcare for medically complex children, the significance of continuity of care, and the need for parents to advocate for their child's health. Dr. Cropp shares insights on preparing for school, fostering independence in children, and the mental health challenges faced by caregivers. They conclude the episode talking about the importance of finding respite to avoid burnout.


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Cactus Bloom Pediatrics Website



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7. Hypertrophic Cardiomyopathy: The Development of HeartCharged04 août 202500:31:05

In this conversation, Katelyn sits down with Hannah Keime from HeartCharged. Hannah Keime was unexpectedly diagnosed with hypertrophic cardiomyopathy (HCM) her first month of high school. A year later, she received an implanted defibrillator due to the severity of her condition. Within months, it saved her life when she went into sudden cardiac arrest in her sleep. Hannah created the organization HeartCharged with her sister, Bethany, who also has HCM and an ICD. They have won a number of awards and international recognition in pursuit of their mission to offer patient-to-patient support and end preventable deaths. They discuss the realities of life with 


Follow Hannah on Instagram @HeartCharged which is their welcoming and responsive hub. You will find a real and raw look at life with cardiomyopathy. 


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HeartCharged Website



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6. Fetal In-Utero Intervention: Our Boston Story14 juil. 202500:43:23

In this  episode, Katelyn McMahan and her husband recount their transformative journey to Boston Children's Hospital for a life-saving in utero procedure for their daughter Goldie, who was diagnosed with congenital heart defects. They share the emotional rollercoaster of preparing for the procedure, the chaos of travel logistics, and the overwhelming support from family and the CHD community. The couple reflects on the significance of their experience, the medical advancements that made it possible, and the hope it brings for Goldie's future.

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5. Positive Impacts of Medical Play with Mary Jenner30 juin 202500:21:58

In this conversation, Katelyn McMahan sits down with Mary Jenner, a former pediatric oncology nurse and the owner of The Butterfly Pig, a company dedicated to creating medical toys that make healthcare more child-friendly. They discuss the importance of play in pediatric healthcare, the journey that led Mary to starting this business, and the various ways The Butterfly Pig supports families and healthcare systems. The conversation highlights the significance of representation in medical play and the role of community in navigating medical journeys. 


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Follow The Butterfly Pig on Instagram @thebutterflypig

Check out The Butterfly Pig online


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4. Walking Before Goldie: My Dad's CHD Journey14 juin 202500:18:23

In this episode, host Katelyn McMahan interviews her father, Steve, about his experiences growing up with congenital heart defects (CHD). They discuss the medical challenges he faced, the advancements in cardiac care over the years, and the emotional impact of living with a chronic condition. The conversation also touches on the generational aspects of CHD, the importance of advocacy for patients, and the role of faith and family support in navigating these challenges. Steve shares his reflections on his childhood, the bond he shares with his granddaughter Goldie, who also has CHD< and offers advice to parents and caregivers of children with similar conditions. 

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3. Living with a Single Ventricle: Lauren’s CHD Story02 juin 202500:28:51

In this conversation, Lauren Celeskey Bednarz shares her journey living with a congenital heart defect, specifically a single ventricle condition. She discusses her early diagnosis, the challenges of growing up with a heart condition, the dynamics with her siblings, and the importance of mental health advocacy. Lauren emphasizes the need for support within the CHD community and how she finds hope despite the challenges she faces. Her story serves as an inspiration for others navigating similar journeys.



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2. From Diagnosis to Advocacy: A Heart Mom's Perspective with Sarah Michelle Boes02 juin 202500:38:13

In this conversation, Katelyn sits down with Sarah Michelle Boes, who shares her journey as a mother of a child with congenital heart defects. Sarah discusses the unexpected diagnosis of her daughter, the emotional and psychological challenges she faced, including grief and guilt, and the complexities of navigating the healthcare system as both a parent and a medical professional. 


The conversation highlights the importance of advocacy, the realities of living with a heart condition, and the balance between being a caregiver and a healthcare provider. In this conversation, Sarah and Katelyn discuss the complexities of navigating congenital heart disease (CHD) as parents. They emphasize the importance of collaboration with medical teams, the balance between hope and realism, and the emotional challenges faced by families. They also highlight the significance of advocacy and community support in improving outcomes for children with CHD, sharing personal experiences and insights on mental health and resilience.


Conquering CHD Website


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Sarah’s Website


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1. Navigating Congenital Heart Defects 02 juin 202500:25:48

In this episode, host Katelyn McMahan shares her personal journey as a mother to Goldie, who was diagnosed with congenital heart defects during pregnancy. She discusses the emotional impact of the diagnosis, the medical complexities involved, and the various surgical pathways available. Katelyn emphasizes the importance of community support and the need for open conversations about the challenges faced by families with medically complex children. The episode aims to provide hope and resources for those navigating similar journeys.


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Trailer: Tiny Little Hearts Podcast 07 mai 202500:01:18

This podcast is about Congenital Heart Disease (CHD), complex medical journeys, parenting through uncertainty and the deep resilience of walking through big life changes. 

Hosted by Katelyn McMahan, a mom to three girls whose life was changed in an instant when she found out her youngest daughter had complex cardiac abnormalities. She went searching to hear about kids with a similar diagnosis and wanted to see the life they were living. She didn’t want the curated, polished stories so she could prepare her heart for the good, bad and ugly. 

This podcast does just that and highlights conversations from individuals, parents, medical providers, and others navigating the very real and overwhelming world of congenital heart defects and other medical complexities. You’ll hear honest conversations, practical advice and space to feel seen and understood. 



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