Heart To Heart With Anna

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

Send us a textWhat would you do if you suddenly discovered that multiple members of your family were living with an intricate genetic condition? Join us for a heartfelt conversation with Regina Lawrence as she opens up about her family's journey with DiGeorge syndrome (a.k.a. 22q11.2 deletion syndrome). From the moment they learned about Aubrey's diagnosis in utero, to the immediate surgeries that followed her birth, Regina shares the raw, emotional experiences of navigating multiple complex medical needs. Dive into the Lawrence family's world, where resilience is not just a necessity but a way of life.Listen as Regina recounts the unexpected revelation of her husband's diagnosis at age 35 and the impact it had on their family dynamics. Discover how the Lawrences juggle specialized medical care, feeding challenges, and the critical role of American Sign Language and communication tablets in Aubrey's day-to-day life. Learn about Tina, Aubrey's sister, and the family's experie

Send us a textHave you ever ignored a small discomfort only to realize it was something far more serious? Join us on "Heart to Heart with Anna" for an eye-opening conversation with Jeff, the creator and host of a non-profit podcast network, who discovered a congenital heart defect called a myocardial bridge at the age of 65. Jeff recounts his terrifying experience of cycling through strange symptoms and surviving a heart attack, ultimately learning the necessity of paying attention to one's body. Through his personal narrative, Jeff underscores the critical role of support networks and timely medical intervention in overcoming health challenges.What happens when traditional medical tests don't give you the answers you need? In this episode, we delve into the complexities of diagnosing and treating ventricular tachycardia and myocardial bridging. Jeff shares the life-saving journey that led him to create his podcast, "Imperfect Heart," focusing on raising awareness about these und

Send us a textWhat if your heart's rhythm was out of sync from birth, yet you persevered to defy medical odds? Join us as Gwenyth Murphy, a resilient second-generation congenital heart defect survivor, shares her compelling journey of managing complete heart block and other heart conditions. From coping with an abnormally low heart rate as a child to receiving her first pacemaker just before college, Gwenyth provides an inspiring look at the evolution of her treatments and the groundbreaking procedure she anticipates.Gwenyth's story takes a fascinating turn as she recounts the unexpected diagnosis of myotonic dystrophy, a condition initially masked by her heart defect symptoms. Discover how this genetic muscular dystrophy was finally identified through persistent symptoms and a critical health crisis after childbirth. Gwenyth sheds light on the often delayed and misdiagnosed nature of the condition, emphasizing the importance of comprehensive medical evaluations and genetic testing in uncovering int

Send us a textDiscover the remarkable resilience of Rachael Gott, our extraordinary guest born with hypoplastic left heart syndrome (HLHS). Despite her condition remaining uncorrected, Rachel has navigated a complex medical journey, including ten cardiac ablations and two device implants, all while avoiding open-heart surgeries. Rachael also faces Marfan syndrome, which adds another layer of complexity to her life. Join us as Rachael shares her inspiring story, highlighting her ability to overcome innumerable challenges and offering hope to others with congenital heart disease (CHD).Rachael's journey is one of incredible strength and persistence. She opens up about her experiences with multiple heart rhythm issues and the difficulties posed by various medications. As she discusses her forthcoming plans for an open-heart Maze procedure and potential heart and kidney transplants at the Cleveland Clinic, Rachael provides us with a unique glimpse into the emotional and physical toll of living with severe hea

Send us a textWhat happens when resilience meets a congenital heart defect? Join us as we uncover the extraordinary journeys of women who have turned their medical challenges into stories of hope and triumph. Begin with Emily Falcon's deeply moving "A Letter to my Younger Self," where she offers wisdom and reflections that will resonate with anyone facing life's obstacles. Move to Michelle Anderson DeRoo's powerful tale in "Exceeding Expectations," where she sheds light on how advocacy and compassionate care can defy even the grimmest medical predictions. And don't miss Allison Holmes' insightful reflections from over 50 years of living with a single ventricle heart, offering lessons learned and immense inspiration.In Chapter 10 of "The Heart of a Heart Warrior," we delve into the emotional rollercoaster of growing up with a severe heart defect. Michelle's narrative takes us through the trials and triumphs, with low oxygen levels and dire prognoses t

Send us a textHow do heart warriors find incredible strength amidst life's most challenging moments? In this episode of "Heart to Heart with Anna," we bring you deeply touching and empowering stories from individuals who have triumphed over congenital heart defects (CHD). Join us as Megan Tones sets the stage with an introduction to Chapter 9, followed by poignant excerpts from Tori Geiger's "From Vulnerable to Victorious" and Jessica Carmel's "The Hearts of a Girl." Tori’s defining moment during a high school sports event and Jessica’s persistent battle with gallbladder disease highlight the resilience and courage of those navigating life with CHD.Discover the transformative power of storytelling through Kimberly Russell's essay, "You Should Write a Book," and Dr. Brandon Lane Phillips' journey from a rural Louisiana childhood to becoming a successful pediatric cardiologist. Kimberly's narrative underscores how sharing personal experiences

Send us a textEver wondered how a heartfelt community can transform lives through stories and shared experiences? Join me on this special episode of "Heart to Heart with Anna" as I express my gratitude for the overwhelming birthday wishes from the congenital heart defect community. You'll be introduced to the latest literary gem from Baby Hearts Press, featuring mesmerizing readings from talented writers Megan Tones and Julie Kerr. Megan's "Overworld" takes us on a touching journey with a busker violinist and a generous listener named Elise, while Julie's poignant poem pays a beautiful tribute to the legacy of cellist Jacqueline du Pré. Plus, hear exciting updates on "The Heart of a Heart Warrior" series, where Megan once again brings her editorial expertise to the forthcoming Volume 4.Prepare to be enchanted by the surreal transformations and fantastical elements in "Overworld" where Peter's bizarre metamorphosis leaves Elise pondering her reality.

Send us a textHave you ever wondered how living with a congenital heart defect can shape one's life journey? This week, we’re diving into the remarkable stories of heart warriors, those extraordinary individuals who navigate life with congenital heart defects. I'm Anna Jaworski, and in this episode, we explore the powerful metaphor of transformation, akin to a caterpillar becoming a butterfly, as we discuss my latest book, "Heart of a Heart Warrior Volume Three: Transformation." We start off with an evocative foreword by Paula M. Miller, who shares her moving journey of resilience and the life-changing support she found through the Adult Congenital Heart Association.Prepare to be moved by the creative spirit of the CHD community. My co-editor, Megan Tones, and I highlight the diverse artistic expressions, from vivid visual artworks to heartfelt poetry and fiction. You’ll hear about the stunning ferret drawing by Julie Kerr and the poignant poems of Lisa Colvil and Becca Atherton. We honor

Send us a textWhat happens when you're expecting a baby with a congenital heart defect during a global pandemic? Join me, Anna Jaworski, as I sit down with Amelia Woods, a courageous heart mom who faced this exact challenge. Amelia shares the emotional rollercoaster of managing her son Henderson's dextrotransposition of the great arteries (d-TGA) diagnosis at 25 weeks' gestation. We explore the intricate preparations for Henderson's birth and his crucial surgeries, including the atrial balloon septostomy and the arterial switch procedure, all while navigating the complexities imposed by Covid-19.Amelia and her husband, Richard, had to master the art of setting boundaries to protect their medically fragile newborn amidst an unprecedented health crisis. Amelia opens up about the isolation they felt and the essential bonding time that these boundaries provided. She candidly discusses the importance of connecting with other heart moms for support, while also maintaining a degree of privacy for

Send us a textWhat happens when your heart condition becomes part of your dating narrative? Today on Heart to Heart with Anna, we welcome back Dr. Corinne Smorra, a psychotherapist and adult living with congenital heart defects (CHD). Dr. Smorra opens up about her personal journey with truncus arteriosus and sheds light on the myths and misconceptions about dating with CHD. From her early days to becoming a psychotherapist, Corinne's experiences have inspired her to create a support group dedicated to helping others navigate dating without allowing their condition to overshadow their lives. Listen in as she shares practical advice on how to let your condition emerge organically in conversations, ensuring it doesn’t dominate the narrative from the start.The challenges of social isolation, especially during the COVID-19 pandemic, are examined through the lens of those with CHD. We discuss the similarities between the social experiences of individuals with CHD and retired individuals, underscoring the impor

Send us a textWhat happens when your entire world is defined by hospital walls and medical jargon? On "Heart to Heart with Anna," we share the poignant and raw journey of James Robinson, a father who walks us through the emotional highs and profound lows of raising his son Nadav, who was born with a congenital heart defect known as single ventricle heterotaxy. James recounts the myriad surgeries, complications like asplenia, and the heart-wrenching impact of eventually losing Nadav. This episode offers deep insights into the resilience required to face such relentless challenges and the indelible way it shapes family identity and daily life.Explore the extraordinary resilience of families navigating medical crises. Genetic testing unveiled a unique mutation in the H5 gene carried by both parents, prompting profound reflections on fate and family dynamics. James shares invaluable strategies for maintaining family connections during prolonged hospital stays, emphasizing the importance of honesty and o

Send us a textAmy Milz opens her heart to us—quite literally—in a candid recount of her life as a congenital heart defect survivor. With grace and vulnerability, she takes us through the paces of her medical odyssey, from the relentless advocacy of her mother to her personal victories in the operating room. Each scar tells a story of resilience and the boundless possibilities of medical science, epitomized by a groundbreaking trial stent that reshaped her destiny. As Amy divulges the critical moments of her surgeries and trials, we are reminded of the strength found in the support of loved ones and the fortitude of the human spirit.The second act of Amy's tale is as colorful and textured as her artwork, a reflection of a journey through shadows into the light of self-discovery. Her transition from a myriad of jobs to pursuing an art education encapsulates a dance with purpose, one that illustrates the transformative power of embracing one's true calling. Amy's artwork, a series born out of navi

Send us a textWhen Hope's first breaths were intertwined with the whispers of uncertainty, my world changed. As a heart mom, each Mother's Day is not just a celebration but a milestone, reflecting the grit and grace it takes to raise a child with a congenital heart defect. Join me, Anna Jaworski, in an episode where we explore the deep emotional landscapes of mothers like me. We'll traverse the highs of motherhood, the lows of fear, and the battles that come with CHD, all through the lens of Mother's Day. Discover how stories of resilience echo through our community, offering wisdom and celebrating the spirit of heart moms everywhere.This episode isn't just about my journey; it's a chorus of voices from the heart mom community, sharing their own powerful narratives. Together, we recognize the role of pediatric cardiologists and the medical community in bolstering our strength, and we honor the courage required to let our children forge their own paths. Hear from fellow heart moms