Heart to Heart with Anna

• CHD Connects Hearts: A Grandmother’s Mission to Unite Us All

  Send us a textWhat happens when a grandmother's love collides with a broken system? When Christy Pace's grandson Hunter was diagnosed with Hypoplastic Left Heart Syndrome before birth, she found herself thrust into an unexpected role – not just as a supportive grandmother, but eventually as a visionary determined to transform how the CHD community connects.Our conversation pulls back the curtain on the rarely discussed perspective of grandparents in the CHD journey. Christy's raw honesty about her emotional response – moving from shock to protection, anger to fear – reveals the complex ripple effects when a heart diagnosis enters a family. When COVID restrictions prevented her from being present for Hunter's birth or even meeting him until he faced a life-threatening cardiac arrest at two months old, Christy's determination only grew stronger.The isolation heart families experience emerged as a central theme in our discussion. As Christy watched her daughter retreat from social gatherings to protect Hunter between surgeries, she recognized a hard truth many relatives miss: this isolation isn't a choice but a survival strategy. "This isn't 'I don't want them to get a cold,'" Christy explains. "This is life and death." Her passionate plea for extended family to keep inviting, even when the answer is consistently "no," offers valuable perspective for anyone supporting heart families.But what makes this conversation truly special is how personal trauma transforms into purpose. After years of searching for resources to help her daughter and grandson, Christy grew frustrated with the scattered nature of CHD support. Rather than starting another foundation, she's created something revolutionary: CHD Connects Hearts, a distraction-free ecosystem bringing together patients, families, organizations, and researchers in one private community without the noise of advertising or algorithms.Whether you're a heart parent, grandparent, or supporter, this episode offers both emotional validation and practical hope. As Christy reveals her vision for united progress in the CHD world, you'll be inspired to consider how connection might be our most powerful medicine.Link to CHD Connects Hearts: https://chdconnectshearts.com/homeAnna's Blog: https://www.heartsunitetheglobe.com/hug-blog/moving-beyond-facebook-joining-forces-with-chd-connects-heartsSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite

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• 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

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• 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

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• 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

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• 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

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