Heart To Heart With Anna

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

Send us a textAfter an unexpected illness during a trip to Poland, I found myself in a reflective state, pondering the journey of "Heart to Heart with Anna" and what lies ahead. This episode is a heartfelt celebration of our 11-year milestone, filled with gratitude for the community that has grown alongside us. I introduce you to some key figures who've enriched our podcast, including producer Rita Scoggins, who shares her family's connection to the congenital heart defect (CHD) community, and Michael Liben, who reflects on his daughter's legacy through a grief-focused podcast. My husband, Frank Jaworski, Ayrton Beatty from Scotland, and Megan Tones from Australia also join us, highlighting the personal stories that have become the backbone of our show. Looking towards 2025, there's an exciting shift on the horizon as we explore genetics and heart conditions in new ways. The community's input is invaluable as we consider themes like children's perspectives on parental s

Send us a textUnlock the future of heart care and understand how a revolutionary cooperative platform is reshaping the landscape of congenital heart disease treatment. Join us as we explore the groundbreaking innovations at HeartWorks, a transformative program at the Mayo Clinic led by Dr. Tim Nelson. With heartfelt insights from Erin Borkowski, a dedicated heart mom, and Rachael Gott, an inspiring adult living with congenital heart disease, we delve into the challenges and advancements that are redefining patient care and clinical trial processes.Meet the pioneers behind the scenes as Dr. Nelson explains how HeartWorks is bridging the gap between research and real-world applications. By harnessing patient-contributed data, this initiative is overcoming the frustrations of traditional clinical trials, making them more effective and timely. Rachael Gott shares her personal journey with HeartWorks, emphasizing the significant impact of ongoing research and patient empowerment in the fight against congenital hea

Send us a textEver thought you could lead an exhilarating life despite a congenital heart defect? Meet Ben Johnson, a formidable heart warrior born with tetralogy of Fallot. Tune in as Ben, now 45, recounts his spirited childhood and how his heart condition didn't stop him from being a vibrant, active child. From hospital memories to a loving family and supportive teachers, Ben's story is a testament to resilience and the power of a strong support system. He takes us through his childhood escapades, proving that with the right mindset and community, a heart defect doesn't have to define your limits.Our conversation with Ben reveals the intricate journey of living with congenital heart defects, focusing on the visible reminders, including his scars and tattoos, and their role in shaping his life narrative. Delve into Ben's fitness journey where he embraces an active lifestyle with weightlifting, debunking common myths about limitations for heart patients. With the guidance of a personal tra

Send us a textDo Halloween festivities bring more joy or concern when you’re living with a congenital heart defect? Ashley DeMarco shares her journey growing up with complex heart conditions, turning personal challenges into stories of resilience. Alongside her, we hear from Michael Liben, who navigates grief with humor on his podcast "Bereaved but Still Me," and Rita, who provides a multi-generational perspective on congenital heart disease (CHD) with her family's experiences. Together, we unravel the nuances of navigating health and community as young adults and parents in the CHD world, painting a picture of hope and solidarity.As we transition into the spirit of Halloween, nostalgia and safety tips blend together in our lively discussions. We reminisce about trick-or-treating in tight-knit communities, while also highlighting the essential precautions for children with heart conditions during these festivities. The contrast between past and present perceptions of safety reveals a world that

Send us a textMeet Marina Lohri, a true trailblazer in the world of congenital heart defects (CHDs). Born with tricuspid atresia, a ventricular septal defect, and an atrial septal defect, Marina’s journey from a life-saving C-section to being among the first in Switzerland to undergo a modified-Fontan procedure at just 11 months old is nothing short of miraculous. In our conversation, Marina unfolds her inspiring story and shares her passion for working at atHeart Medical, where she is dedicated to promoting innovative solutions for those with similar heart conditions.Navigating the complexities of living with Atrial Fibrillation (AFib) and congenital heart defects is no small feat. Marina opens up about her personal experiences with rapid heart rates and the profound decision to undergo an ablation. As she contemplates the intricate considerations surrounding pregnancy with a congenital heart condition, we delve into the evolving medical advice she received and the diverse perspectives of healthcare professi

Send us a textUnlock the latest in cardiac neurodevelopmental research with Dr. Dawn Ilardi, a distinguished clinical neuropsychologist, as we navigate the complexities of how congenital heart defects (CHDs) impact children's neurodevelopment. Discover the groundbreaking strides made by the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), a global network of over 50 institutions revolutionizing clinical care and research. Explore cutting-edge advancements in brain imaging and gain insight into the often-overlooked influences of non-cardiac factors, such as the placenta, along with the indispensable role of family involvement in enhancing developmental outcomes.Hear a poignant story of parental vigilance that underscores the vital need for early detection and standardized imaging in pediatric cardiology. Despite the challenges faced by families with limited resources, new initiatives are bridging the gap between hospital-based care and private practice, providing essential support and education. C

Send us a textHow do families navigate the uncharted waters of raising children with congenital heart disease (CHD)? Join us on a groundbreaking episode of Heart to Heart with Anna, where we host our very first live show with a studio audience! With guests like Amanda, Joey, Michael, Ayrton, Regina, Rachel, and Chris, you'll hear raw and honest conversations about everything from recent surgeries to the complexities of living with DiGeorge syndrome and HLHS. The live audience format brings an unscripted, spontaneous energy that's sure to engage and inspire.Ever wondered what it takes to grow a podcast network dedicated to CHD? We share our ambitious plans for the next five years, including launching podcasts in multiple languages such as Spanish, Urdu, and even an African language. You’ll laugh along with us as we recount some of the humorous mishaps we've encountered—like losing an internet connection during a live show from a coffee shop! Our journey is a testament to the passion and communit

Send us a textHow do you condense a lifetime of experiences into a single essay? Megan Tones reveals the challenges and triumphs of contributing to the "Heart of a Heart Warrior" anthology, where she found a way to spotlight positivity amid adversity. Joined by Sheri Turner, a supportive beta reader and CHD advocate, we explore how storytelling can be both a healing process and a community-building tool. Together, Megan and Sheri shed light on the transformative power of words in the CHD community.Anticipation builds as we discuss the upcoming volume of "The Heart of a Heart Warrior" book series, focusing on themes of resilience and reflection. This volume aims to capture a wide range of experiences, from parenting older children with CHD to navigating the unique challenges posed by COVID-19. We also delve into the neuropsychological hurdles faced by CHD patients and offer practical advice for those interested in contributing their stories. The episode takes a heartfelt turn as we grapple

Send us a textWhat does it take to recognize the early signs of congenital heart defects (CHD) in a newborn? In this emotionally charged episode of "Heart to Heart with Anna," we welcome Raadhiyah Matthews, who recounts her harrowing journey with her daughter Thaakirah. From the initial dismissals by medical professionals to the profound struggles with feeding and gaining weight, Raadhiyah's candid story captures the relentless love and anxiety only a mother can understand. Her tireless advocacy led her to establish Brave Little Hearts South Africa, a beacon of hope for parents facing similar battles.We also hear about Thaakirah's incredibly quick diagnosis at Red Cross Memorial Children's Hospital, leading to immediate surgery and a rollercoaster of emotions. The stakes heighten as Raadhiyah describes the complications, including a severe brain infection that resulted in emergency neurosurgery and temporary paralysis. Raadhiyah's strength and resilience is laid bare, offering li