Heart To Heart With Anna

Send us a textWhat if the most powerful lever for your child’s growth isn’t another appointment, but how you care for yourself? We sit down with neuropsychologist Dr. Dawn Ilardi to connect the dots between CHD, early brain development, medical trauma, and the everyday choices that help families thrive. From prenatal influences on cognition and behavior to the protective force of stable routines and responsive parenting, we translate research into practical moves you can make this week.We explore why CHD outcomes are shaped long before surgery and how heterogeneity makes each child unique, yet still able to benefit from adapted tools used in the general population. Dr. Ilardi explains how family factors—predictable structure, warm communication, and realistic challenges—can buffer stress and build resilience. We also address the quiet weight of medical trauma for parents and teens, outlining small, affordable supports like gratitude journaling, micro‑breaks, and CHD‑savvy counseling, alongside the healing pow

Send us a textA month of movement—across states, across continents, and across ideas—shapes this episode of Heart to Heart with Anna, where personal connection meets the frontiers of heart medicine. We begin with gratitude, travel, and family updates, then explore two breakthroughs shaping the future of congenital heart care: a major open-access study using whole-genome sequencing to forecast outcomes after CHD surgery, and nanotechnology that turns everyday implants into infection-resistant, tissue-regenerating tools.CHD News Article Referenced: “Genome sequencing is critical for forecasting outcomes following congenital cardiac surgery,” published in Nature Communications (open-access).

Send us a textWhat does it take to learn to sit again, then stand, then chase the horizon at the Ironman World Championship? We sit down with endurance athlete and keynote speaker Elmar Sprink to trace the steps from sudden cardiac arrest and seven months on ECMO to a disciplined, data‑driven comeback fueled by routine, empathy, and stubborn hope. Elmar opens up about the invisible work of recovery—why he treated hospital life like a training plan, how a visitor spreadsheet kept his spirits up, and the role therapy and humor played when the outcome was uncertain.We unpack the nuts and bolts of training after a heart transplant: threshold testing to set safe zones, the difference denervated hearts can make to heart rate response, and why indoor cycling and carefully staged swim returns protect against infection while rebuilding fitness. Elmar explains how steady training lowered his blood pressure and reduced medications, and he shares the small, daily wins—like a perfect cappuccino—that kept his motivation al

Send us a textWe share community updates and new events, then sit down with Ayrton Beatty to unpack how an antidepressant triggered Long QT syndrome, what symptoms to watch for, and the everyday tactics that keep them safe while honoring Edward’s memory. The conversation blends hard science, lived experience, and practical steps anyone can use to advocate with confidence.• Red Hat Society join and conference highlights• Down syndrome and CHD awareness link• Upcoming Zoom listening session details• Live recording on transition and life stages• Ayrton’s diagnosis of drug‑induced Long QT• Warning signs during exercise and daily walks• Role of wearables in spotting heart‑rate thresholds• Tapering off venlafaxine and mental health impact• Switching to citalopram and ongoing vigilance• Triggers to avoid including sudden noises and swimming• Practical safety tips including hydration and potassium• Advocacy advice and seeking second opinions• Remembering Edward and hidden electrical disordersJoin us on November 25th,

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 gather

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

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 ser

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 "spr

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.

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 kno

Send us a textFrom a family vacation that turned tragic to the creation of Pakistan's first specialized children's heart hospital, Ana Tanveer Abdullah's journey illustrates how profound loss can spark transformative change.When Ana's athletic, academically gifted brother Daniel collapsed unexpectedly at age 15, no one suspected a heart condition. Despite receiving a pacemaker after being diagnosed with cardiomyopathy, Danial passed away at 16 while awaiting a heart transplant in India. This devastating loss became the catalyst for an extraordinary mission.Together with her father and Farhan Ahmad (who also lost a child to congenital heart disease), Ana founded the Pakistan Children's Heart Foundation with an ambitious vision: to build the country's first specialized cardiac hospital for children. Through innovative fundraising campaigns inspired by Danial's athletic spirit and tireless advocacy, they've now achieved what once seemed impossible.The Children's Heart

Send us a textWhat happens when you've spent your whole life thinking your heart condition was "fixed," only to discover it's actually a lifelong journey? Elle Pendrick shares this profound revelation that came after her fourth open-heart surgery, forever changing how she understood her congenital heart disease.Born in 1983 with complex CHD in rural Australia, Elle's early years were defined by long journeys to Sydney for medical care. Growing up as the only person with a serious cardiac condition in her small town of Wagga Wagga created an isolating experience—one that shaped her understanding of her own health. The shocking realization at age 21 that her heart disease was not cured but rather a lifelong companion became a turning point in her identity and purpose.Elle takes us through her remarkable transition from viewing CHD as something to hide to embracing it as part of her story. Her evolution into advocacy work led her to help develop Australia's groundbreaking Standards

Send us a textA broken wrist serves as an unexpected metaphor for the heart warrior's journey in this illuminating conversation with fundraiser and podcaster Amy Earhart. When Anna's recent accident left her with a titanium plate and a new perspective on recovery, it highlighted the resilience that characterizes the CHD community—adapting when our bodies say "enough" and finding creative ways forward.Amy Erhart brings this resilience to life through her remarkable story. Born with hypoplastic left heart syndrome in 1983, she's channeled her experience into creating meaningful change. Her "Putt Around Kalida" fundraiser transforms her small hometown into a mini-golf adventure where local businesses design elaborate putting greens—from a smoking firehouse to a church model that's been preserved for generations. What makes this event special goes beyond the $20,000 raised; it's the photos of local CHD children displayed at the town park, creating powerful moments of r

Send us a textIn dieser speziellen deutschsprachigen Episode von 'Herz zu Herz mit Anna' spricht Jodi Alderfel mit Marina Lohri, die mit Trikuspidalatresie, ASD und VSD geboren wurde und eine modifizierte Fontan-Operation überlebte. Marina teilt ihre lebenslange Reise, von ihrer Herzoperation als Baby bis hin zu ihrer Karriere bei atHeart Medical, einem Unternehmen, das Geräte zur Behandlung von ASD entwickelt. Die Episode erörtert auch Marinas Erfahrungen mit Vorhofflimmern und einer Ablation im Jahr 2018. Marinas persönliche und berufliche Erfahrungen bieten wertvolle Einblicke für andere Patienten mit angeborenen Herzfehlern und zeigen, wie sie durch Mut und Entschlossenheit ein sinnvolles Leben führt.(Besonderer Dank geht an Jodi Alderfel, die uns in dieser Folge als Gastmoderatorin zur Seite stand.)In this special German-language episode of 'Heart to Heart with Anna,' Jodi Alderfel speaks with Marina Lohri, who was born with tricuspid atresia, ASD, and VSD and survived a modified Font

Send us a textThe journey of raising a child with a critical congenital heart defect (CCHD) involves navigating far more than just medical challenges. Behind every heart surgery and cardiology appointment lies a complex web of developmental considerations that can profoundly shape a child's future.Dr. Dawn Ilardi, a clinical neuropsychologist with over 16 years of experience in cardiac neurodevelopment, brings clarity to this often-overlooked aspect of heart care. Unlike typical developmental patterns, children with CCHDs may present with scattered strengths and weaknesses that don't fit neatly into standard diagnostic categories. While some may develop recognizable conditions like ADHD, autism, or dyslexia, others show unique profiles that require specialized understanding.The conversation explores the fascinating heart-brain connection, revealing how brain development begins simultaneously with heart formation during fetal development. Structural heart defects can affect blood flow patterns to the

Send us a textWhen Sara Bonneau's newborn son was diagnosed with Tetralogy of Fallot, she had no roadmap for the journey ahead. In this raw and powerful conversation, she takes us through the evolution of parenting a child with a serious heart defect—from the terrifying early days without social media support groups to watching her son become a competitive high school basketball player.Sara's candor about her mental health struggles resonates deeply as she shares her delayed PTSD diagnosis following her son's first surgery. "I experienced a lot of anxiety after Ryan was born. I remember being so scared he was going to die if I let him out of my sight," she reveals, encouraging other heart parents to seek help sooner than she did.The conversation takes a powerful turn when Sara describes how tragedy became the catalyst for her unexpected advocacy work. After Sara discovered a 15-year-old basketball player in her son's rival team collapsed and died, she discovered there was no AED

Send us a textIn this engaging episode of Heart to Heart with Anna, we dive into the significant strides made in pediatric cardiology, focusing on hypoplastic left heart syndrome (HLHS) and the inspiring journey of dedicated professionals like Dr. Paul Grossfeld. This episode highlights the complex nature of congenital heart disease, exploring not just the technical advancements in surgical techniques and post-operative care, but also the emotional journeys faced by families. Dr. Grossfeld shares powerful stories from his practice, illustrating the deep connections formed between healthcare providers and patients.Listeners will learn about the critical role of early diagnostics and how modern medicine has transformed the fatality rates associated with HLHS. The episode discusses the collaborative efforts across medical disciplines, which lead to innovative treatment and significant improvements in patient outcomes. With a keen focus on the importance of research to address genetic and environmental influences

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Send us a textAfter facing the heart-wrenching loss of a beloved family matriarch to a once-benign heart condition, I am reminded of the fragile nature of life and the critical importance of heart health. Join me as we explore these deeply personal connections to heart disease and the heartfelt stories of families who navigate these challenges with resilience and love. This episode kicks off with a touching account of a family who urged me to share their loss hoping it might help another family living with a chronic, untreated heart condition to maintain consistent monitoring, and the efforts of "And Mama Too: a Dash of Love," a non-profit dedicated to supporting postpartum heart and NICU moms.During this episode, you'll meet the inspiring Kate Doherty-Schmeck, Executive Director of Global ARCH, who shares her dedication to transforming outcomes for childhood-onset heart diseases. Kate's insights into the power of global collaboration underscore the immense impact of organizations advocati

Send us a textCan an unexpected adventure in Kraków teach you about resilience and support? Join me, Anna Jaworski, as I recount a thrilling axe-throwing escapade with my husband, Frank, which became an unexpected metaphor for our family's journey with our courageous daughter, Hope, who battles a congenital heart defect. In this episode of Heart to Heart with Anna, we spotlight the power of belief and community support, drawing parallels between personal adventures and the challenges of raising a child with CHD. Dive into the exciting plans for Heart Month, where Mended Little Hearts takes center stage with the "Rock your Scar" photo contest and the "Share your HeArt" art competition, igniting awareness and solidarity within the CHD community.Our journey doesn't stop there. Reflecting on the Top Ten Episodes of 2024, discover the inspiring stories of resilience and advocacy from amazing individuals. Hear about Hope's passion for writing and the unwavering strength of heart m