Heart to Heart with Anna

• Half a Heart, Whole Stories: Steven Hutchison, Jessica Cowin, and More

  Send us a textSteven Hutchison has defied expectations his entire life. Born with hypoplastic left heart syndrome (HLHS) nearly four decades ago, he is now a 38-year-old husband, father of three, and full-time worker who approaches each day with remarkable perspective and gratitude.Diagnosed at two weeks old, Steven underwent staged surgeries including the Glenn and Fontan procedures, and now lives with Fontan-associated liver disease, one of the long-term complications that requires careful monitoring. But his story is about more than medical milestones. Steven shares how living on the same street as his parents and brother has created a strong support system, how he explains his condition to his children with honesty and hope, and how his faith and outlook shape the way he moves through life.From two 12-hour ablations to participating in groundbreaking research with HeartWorks, Steven’s resilience continues to inspire. His message to parents of newly diagnosed HLHS babies is simple but powerful: there is so much more possibility today than when he was born.Steven’s story is a reminder that people born with congenital heart disease can build meaningful lives filled with purpose, family, and joy—not despite their condition, but alongside it.Links to events mentioned in this episode:Link to register for FON-ONE: https://web.cvent.com/event/80f0addb-25c0-4d87-9cb1-99931b9062db/summaryCNOC Scientific Session: https://cardiacneuro.org/scientific-sessions/HeartWorks: https://heartworksinc.org/Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

  --------  

  47:19

  --------

  47:19
• Voices of Strength: Tyler Šajdák's HLHS Journey and Advocacy in the CHD Community

  Send us a textTyler Šajdák wasn't supposed to grow up. Born with hypoplastic left heart syndrome in 1993, he was part of a generation receiving experimental surgeries with uncertain outcomes. Today, at 31, he works as an academic advisor, pursues a master's degree, and serves as a powerful advocate for the adult congenital heart defect community."I've been told by people that just by looking at me, they wouldn't know that I had a heart defect," Tyler shares during our conversation. This invisibility is both a blessing and a challenge for the growing population of adult CHD survivors who must navigate a healthcare system still learning how to treat them.Tyler's involvement with Single Ventricle One (SV1) - the recently unified organization combining pre-Fontan and post-Fontan networks - puts him at the forefront of efforts to improve care for adults with complex heart conditions. "I think my role is making sure the other planners are thinking of how the adults can be served as well," he explains, describing how medical conferences historically focused primarily on pediatric care.Our conversation delves into deeply personal territory as Tyler recounts his experience with vocal cord paralysis following surgery and the profound moment when his grandfather, after suffering a stroke, heard Tyler speak with a full voice for the first time shortly before passing away. We also discuss his recent transplant evaluation, where doctors delivered some surprising news.For anyone living with CHD or caring for someone with a heart defect, Tyler's story offers both practical guidance and emotional resonance. From balancing health concerns with career ambitions, to finding community with others who share similar experiences, he demonstrates how adults with congenital heart conditions can thrive while helping shape a medical field still discovering what lifelong care looks like for this first generation of survivors.Connect with the SV1 community through their upcoming patient day in Indianapolis this October - whether you're a patient seeking connection, a parent looking toward your child's future, or a medical professional committed to advancing care standards for this unique population.Helpful Links mentioned during this episode:Boston Children's Hospital Single Ventricle Family Day at the New England Aquarium: https://ow.ly/omax50WAN8AKristi Pena’s episode about Barth Syndrome: https://www.buzzsprout.com/62761/episodes/398916Link to register for SV-One Fall 2025: https://www.svone.org/events/fall-2025-learning-sessionLink to "The Heart of a Heart Warrior" book series on Baby Hearts Press. Tyler's essay is in Volume One: Survival: https://babyheartspress.myshopify.com/products/the-heart-of-a-heart-warrior-volume-1Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

  --------  

  45:51

  --------

  45:51
• Creating Change: The Heart Behind Embers of Love

  Send us a textWhat happens when a tiny heart warrior inspires a movement of love and advocacy? In this powerful conversation, I sit down with Haley Graham, whose daughter Emberly Dawn was born with multiple heart defects, including a rare Taussig-Bing anomaly. Haley takes us through the emotional journey from that first concerning ultrasound to the founding of Embers of Love, a nonprofit that's changing lives across Manitoba.Haley shares the raw truth of those early days—the quiet car ride home after receiving concerning news at her 41-week ultrasound, being flown from Winnipeg to Edmonton for emergency treatment just days after Emberly's birth, and the month spent in a hotel across from the children's hospital. Her story captures both the inherent isolation of receiving a CHD diagnosis and the profound community support that emerged to sustain them.The name "Embers of Love" came from a touching observation made during Emberly's hospital stay—that this tiny baby somehow "spreads embers of love to everyone she meets." What began with handmade keychains and candles has blossomed into a significant advocacy organization that's participated in over 35 initiatives since 2023. From donating sound machines to the NICU to organizing craft kits for Heart Camp campers, Haley shows how personal experience can transform into meaningful community action.Most moving is Haley's reflection on how Amberlee has become "the flame to our family fire," completely shifting their perspective on what matters in life. Her story reminds us that even in our most vulnerable moments, we can find purpose, create lasting change, and spread those precious embers of love to others walking similar paths.Ready to get involved in supporting the CHD community? Visit www.heartsunitetheglobe.com to learn how you can join our volunteer team and make a difference in the lives of heart warriors and their families.Links:Embers of Love: https://www.embersoflove.ca/World’s smallest pacemaker story: https://tinyurl.com/TinyPmakerFascinating article about the history of the Taussig-Bing Anomaly. https://pmc.ncbi.nlm.nih.gov/articles/PMC2801930/Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

  --------  

  46:05

  --------

  46:05
• From Cape Town to Courage: Navigating CHD in South Africa

  Send us a textWhat happens when your child needs heart surgery, but the operation keeps getting postponed? How do you navigate a complex healthcare system while still supporting other families going through similar struggles? Candice Swartland takes us deep into this reality from Cape Town, South Africa.Candice's journey began when her son Riley was diagnosed with Tetralogy of Fallot shortly after birth—despite monthly ultrasounds during pregnancy that detected nothing wrong. Through three open-heart surgeries and the constant waiting for a fourth, Candice discovered strength she never knew she had. "Despite whatever you are going through," she shares, "you and your family and your kid with heart disease, you are still there for the next heart parent."The striking differences between CHD care in South Africa versus more developed nations become clear as Candice describes the waiting game for surgeries, where emergency cases repeatedly push Riley's procedure further down the list. Yet amidst these challenges, something beautiful emerges: a global community of heart families connected by shared experiences that transcend borders.Perhaps most inspiring is how Riley defied medical expectations. Doctors predicted he would never attend a normal school, yet today he's a top student in his class. Even more remarkable, both Riley and another heart warrior have become advocates themselves, running awareness programs at their school.This conversation reveals the universal truths of the CHD journey: the fear, the faith that sustains us, and the power of community. As Candice powerfully states, "Your child is my child. Together, we are one." Her words remind us that whether in South Africa or anywhere else in the world, heart families share a profound connection that makes us stronger together.Links discussed in the episode:The Cure Gala: https://www.buildingthecure.org/eventsBrave Little Hearts South Africa: https://www.facebook.com/BraveLittleHeartsSASupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

  --------  

  34:26

  --------

  34:26
• One Voice: United Against Congenital Heart Disease with Monique Kemp

  Send us a textMonique Kemp's world turned upside down when her unborn son was diagnosed with an interrupted aortic arch at seven months of pregnancy. What followed was a harrowing journey through six open-heart surgeries, months of hospitalization, and the birth of something unexpected – a powerful vision for supporting other families facing similar challenges.From those early days sitting beside her newborn's hospital bed to founding Heart of Hope-Cape Town, Monique shares with raw honesty how she transformed her personal pain into purpose. Her support group, now running for 12 years, fills a critical gap she identified during those long hospital stays – medical staff trained to heal bodies, not necessarily to hold space for parents' emotional trauma.The conversation takes a dramatic turn when Monique reveals how her maternal instinct potentially saved her son's life. As Daniel entered his teen years, his complaints of pain were repeatedly dismissed as psychological by doctors who had known him since infancy. Only after switching to a new pediatrician did they discover his heart conduit had grown down into his stomach, displacing organs and causing genuine physical distress. This experience highlights a dangerous blind spot in CHD care–the critical transition period between ages 10-21 when patients are most likely to fall through the cracks.Perhaps most eye-opening is Monique's perspective on global CHD care disparities, comparing attitudes toward heart interventions between North and South India, and advocating passionately for what the CHD community needs most: to become "one voice" as prominent as the condition itself, which remains the number one birth defect worldwide.Whether you're a heart parent seeking community, a medical professional wanting deeper insight into patient experiences, or simply someone interested in how personal tragedy can transform into powerful advocacy, this conversation will leave you understanding why the CHD journey requires both medical expertise and emotional support that only other heart families can truly provide.Links Mentioned in the Episode:Top 20 Congenital Podcasts: https://podcast.feedspot.com/congenital_disorders_podcastsBaby Hearts Press: https://www.babyheartspress.comSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

  --------  

  34:09

  --------

  34:09

Więcej Zdrowie i Fitness podcastów

Trendy w podcaście Zdrowie i Fitness

O Heart to Heart with Anna

Heart to Heart with Anna: Podcasty w grupie