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Biscuits & Jam
1 Shuai Wang’s Journey from China to Charleston 38:30
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LikedChef Shuai Wang was the runner-up on the 22nd season of Bravo’s Top Chef and is the force behind two standout restaurants in Charleston, South Carolina—Jackrabbit Filly and King BBQ—where he brings together the flavors of his childhood in Beijing and the spirit of the South in some pretty unforgettable ways. He grew up just a short walk from Tiananmen Square, in a tiny home with no electricity or running water, where his grandmother often cooked over charcoal. Later, in Queens, New York, his mom taught herself to cook—her first dishes were a little salty, but they were always made with love. And somewhere along the way, Shuai learned that cooking wasn’t just about food—it was about taking care of people. After years working in New York kitchens, he made his way to Charleston and started building something that feels entirely his own. Today, we’re talking about how all those experiences come together on the plate, the family stories behind his cooking, and what it’s been like to share that journey on national TV. For more info visit: southernliving.com/biscuitsandjam Learn more about your ad choices. Visit podcastchoices.com/adchoices…
Fit and Fearless: Defying Limits with Tetralogy of Fallot
Manage episode 449808622 series 2286909
Content provided by Anna Jaworski. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Anna Jaworski or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.
Ever 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 trainer and self-monitoring, Ben exemplifies how managing health proactively can lead to a robust and fulfilling life, inspiring others with heart conditions to pursue their ambitions confidently.
The episode doesn't just stop at physical well-being. We explore the significant link between exercise and mental health, sharing personal triumphs over post-surgical discomfort and the incredible benefits of targeted workouts. From stretching and strengthening exercises to the profound impact of endorphins, discover how maintaining an active routine can elevate mood and reduce anxiety. Encouraging inclusivity in physical activities, we stress that everyone, irrespective of physical limitations, can find joy and freedom in movement. Join us in fostering a community of heart warriors, advocating for empowerment, and cherishing each milestone along our shared journeys.
Ben Johnson's contact information: https://tinyurl.com/y9yw53nj
Ben's stretching episode for lats: https://youtu.be/tlkjkpt9tE8
Ben's YTWL exercise:
https://www.youtube.com/watch?v=5pGqzU0y6yk
Support the show
Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
Social Media Pages:
Apple Podcasts
Facebook
Instagram
MeWe
Twitter
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Website
Chapters
1. Meeting Ben Johnson (00:00:00)
2. Ben's weightlifting experience (00:08:30)
3. Ben's holistic lifestyle (00:19:33)
480 episodes
ShareManage episode 449808622 series 2286909
Content provided by Anna Jaworski. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Anna Jaworski or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.
Ever 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 trainer and self-monitoring, Ben exemplifies how managing health proactively can lead to a robust and fulfilling life, inspiring others with heart conditions to pursue their ambitions confidently.
The episode doesn't just stop at physical well-being. We explore the significant link between exercise and mental health, sharing personal triumphs over post-surgical discomfort and the incredible benefits of targeted workouts. From stretching and strengthening exercises to the profound impact of endorphins, discover how maintaining an active routine can elevate mood and reduce anxiety. Encouraging inclusivity in physical activities, we stress that everyone, irrespective of physical limitations, can find joy and freedom in movement. Join us in fostering a community of heart warriors, advocating for empowerment, and cherishing each milestone along our shared journeys.
Ben Johnson's contact information: https://tinyurl.com/y9yw53nj
Ben's stretching episode for lats: https://youtu.be/tlkjkpt9tE8
Ben's YTWL exercise:
https://www.youtube.com/watch?v=5pGqzU0y6yk
Support the show
Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
Social Media Pages:
Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website
Chapters
1. Meeting Ben Johnson (00:00:00)
2. Ben's weightlifting experience (00:08:30)
3. Ben's holistic lifestyle (00:19:33)
480 episodes
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Heart to Heart with Anna
1 One Voice: United Against Congenital Heart Disease with Monique Kemp 34:09
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Play Later Play Later Lists Like LikedSend us a text Monique 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_podcasts Baby Hearts Press: https://www.babyheartspress.com Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Building a Legacy: Transforming CHD Care in Pakistan 36:53
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Play Later Play Later Lists Like LikedSend us a text From 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 Hospital opens in Lahore this April, eliminating the need for Pakistani families to seek expensive treatment abroad. Beyond the physical facility, their "Project by Danial" trains young cardiologists and surgeons specifically in pediatric cardiac care, ensuring sustainable healthcare improvements throughout the country. Ana's story reminds us of the remarkable resilience of the human spirit. "We are trying to find peace in this world," she reflects. "He had already found his peace." Through their foundation's life-saving work, Danial's legacy touches countless families across Pakistan, transforming one family's grief into hope for an entire nation. Join our community and discover how you can support organizations like the Pakistan Children's Heart Foundation that are changing the landscape of pediatric cardiac care worldwide. Link to Global Cardiac Alliance: https://cardiac-alliance.org/ Link to the Heart to Heart with Anna episode featuring Farhan Ahmad: https://www.buzzsprout.com/62761/398968-a-miracle-in-pakistan Pakistan Children's Heart Foundation (PCHF): https://pchf.org.pk/ Project Danial: https://pchf.org.pk/cause/project-danial/ Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 No Cure, Just Courage: Navigating Life with Congenital Heart Disease 54:10
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Play Later Play Later Lists Like LikedSend us a text What 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 of Care for Childhood Onset Heart Disease, which includes world-first mental health and neurodevelopmental standards. This unified approach shows how Australia's tight-knit CHD community has created comprehensive care models that focus on whole-person wellness rather than just cardiac function. The conversation explores fascinating comparisons between Australian and American healthcare systems, drawing from Elle's recent visit to the United States. Her insights reveal how different funding models, advocacy approaches, and support organizations shape patient experiences despite serving the same medical needs. Elle's perspective offers valuable lessons for anyone interested in healthcare policy and patient advocacy. Most powerfully, Elle describes transforming her medical journey into resources for others. Her book "Your Ultimate Surgery Success Guide" and her platform "Adulting Well" address practical challenges faced by those with chronic conditions—from workplace conversations and financial planning to mental health support. By sharing her expertise on navigating healthcare systems, Elle demonstrates how lived experience becomes a powerful tool for helping others. Join us for this inspirational conversation about resilience, advocacy, and finding purpose through personal challenge. If you're facing a chronic health condition or supporting someone who is, Elle's wisdom offers both practical guidance and heartfelt encouragement. Global ARCH’s leadership training opportunity: https://global-arch.org/advocacy-training/ Elle’s Book on Amazon: https://www.amazon.com/dp/B0DCV2TCQZ Elle’s Website: https://www.adultingwell.au/ Elle’s Blog: https://www.adultingwell.au/Blog Elle’s Instagram: https://www.instagram.com/adultingwell/ Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Putting Around for a Purpose: Golf, Heart Warriors, and Small-Town Magic 37:06
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Play Later Play Later Lists Like LikedSend us a text A 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 recognition for families still processing their diagnosis. The conversation shifts to Amy's podcast journey with "Diaries of a Heart Warrior," where she's published over 30 episodes—far surpassing the six-episode mark where most podcasters abandon their shows. Through these conversations, Amy found the connection she'd been missing: "I didn't know a lot of people with CHD until these last couple years. This is how I'm finally meeting people." These exchanges have brought validation that she's not alone in her complex feelings about life with a congenital heart defect. Perhaps most meaningful is Amy's approach to fundraising, focusing on direct support for families rather than solely research: heart camps for children, gas money for hospital trips, hotel accommodations during treatments. It's a philosophy born from understanding that while research is crucial, the day-to-day needs of families navigating CHD require immediate attention. Have you experienced the power of community support during health challenges? Listen now and discover how small towns and big hearts are creating meaningful change for CHD families everywhere. Amy Erhart's podcast, "Diaries of a Heart Warrior": https://www.buzzsprout.com/2268461 Anna's CHD Connects Hearts link: https://chdconnectshearts.com/products-list?am_id=annajaworski3819 Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
Send us a text In 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 Fontan procedure. Marina shares her lifelong journey, from her heart surgery as a baby to her career at atHeart Medical, a company developing devices to treat ASD. The episode also discusses Marina's experience with atrial fibrillation and an ablation in 2018. Marina's personal and professional experiences offer valuable insights for other patients with congenital heart disease and show how she leads a meaningful life through courage and determination. Here is a link to Marina's episode in English with Anna: https://tinyurl.com/Marina-Lohri Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 When Hearts and Minds Unite: Navigating Neurodevelopment in CHD 56:13
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Play Later Play Later Lists Like LikedSend us a text The 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 developing brain, while surgical interventions carry risks of small strokes or other brain injuries. For parents wondering why their child struggles with handwriting, speech delays, or learning difficulties despite excellent medical care, this discussion provides crucial insights. Particularly compelling is the discussion about balancing protection with developmental progress. How do you navigate the tension between keeping a medically fragile child safe while ensuring they develop age-appropriate skills and independence? Dr. Ilardi offers practical strategies for finding this balance, emphasizing the importance of creating a supportive "village" around both the child and parents. Whether you're a parent, medical professional, or educator working with heart warriors, this profound conversation will transform your understanding of the developmental journey these remarkable children face. Most importantly, you'll discover pathways to help them reach their full potential through multisensory learning approaches, compensatory strategies, and family-centered support. Helpful Links: Christy Pace's CHD Connects Hearts: https://chdconnectshearts.com/home Dawn Ilardi's other Heart to Heart with Anna Appearances: Unlocking Neurodevelopmental Breakthroughs: Impact of CHDs and Parental Influence https://www.buzzsprout.com/62761/episodes/15872291 What is Normal Child Development in Children with Complex Congenital Heart Defects? https://tinyurl.com/DawnIlardi2014 Dr. Ilardi's website: https://www.pedneurocenter.com Dr. Ilardi's email: DawnIlardi@pedneurocenter.com Gastrointestinal Issues and Feeding Tubes in the CHD Community: https://www.buzzsprout.com/62761/episodes/1999819 Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 From Tetralogy of Fallot to Changing State Law: Sara Bonneau's Unstoppable Mission 45:24
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Play Later Play Later Lists Like LikedSend us a text When 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 available that might have saved his life. Despite having no legal background, this special education teacher successfully campaigned for Rhode Island legislation requiring AEDs in all middle and high schools. Her message to listeners facing their own struggles is beautifully simple: "Your voice matters. I was just a mom. I had a voice. I made a very significant change for student athletes and children in Rhode Island just by sharing my story and speaking from the heart." Sara's journey from terrified parent to legislative changemaker demonstrates how we can transform our deepest fears into purposeful action. Whether you're a heart parent seeking connection, an advocate looking for inspiration, or someone navigating the healthcare system, Sara's story will remind you of the incredible power one determined voice can have. Subscribe now and join our community of families and professionals dedicated to improving lives in the congenital heart defect world. Helpful Links: Diane Pucci's episodes: The Miracle of Growing Up with a CHD: https://www.buzzsprout.com/62761/episodes/398967 Voices of Victory: Overcoming Congenital Heart Challenges: https://www.spreaker.com/episode/voices-of-victory-overcoming-congenital-heart-challenges--58745010 Discord Server Link: https://discord.gg/WZwQf7pPM8 CardioHUB 2025 link: https://www.cardiologyconferenceeurope.com/ HUG website link: https://www.heartsunitetheglobe.com Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 How Research is Reshaping Lives in Congenital Heart Disease 1:01:15
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Play Later Play Later Lists Like LikedSend us a text In 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 on heart conditions, Dr. Grossfeld emphasizes the need for community support in fundraising and awareness initiatives. As the conversation shifts toward the importance of heart screenings for athletes, listeners will discover how these measures can prevent tragic outcomes and promote healthy practices among young sports enthusiasts. We encourage our audience to reflect on their understanding of pediatric heart health and to become advocates for research and support within the community. Join us in this eye-opening episode that aims not only to inform but to inspire action among listeners who share a commitment to the congenital heart disease community. Subscribe, share, and engage with us to help uplift and empower those affected by these conditions. Here are some helpful links mentioned in this episode: HeartWorks: https://www.webuildhearts.org Dr. Paul Grossfeld's charities: Light the Way: https://radyfoundation.org/get-involved/events/light-the-way/ Miracle Makers: https://radyfoundation.org/ways-to-give/fundraise/miracle-makers/ Hearts Unite the Globe (HUG): https://www.heartsunitetheglobe.com Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Navigating Personal Advocacy: Empowering Journeys in Heart Health with Emily Falcon and Anna Jaworski 43:36
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Play Later Play Later Lists Like LikedSend us a text Emily Falcon's journey with a rare heart condition is nothing short of inspiring. After multiple heart surgeries, she defied the odds and became a dedicated 5K athlete, showcasing resilience that many find empowering. Joined by Jenn Dimas from the Fort Worth Public Library, Emily shares how literature has been a powerful companion in navigating her chronic illness. This episode also shines a light on Heart Month, weaving in personal traditions and cherished memories, such as honoring a mother's legacy through an annual cruise. Anna Jaworski, a mother to a single ventricle heart survivor, shares her story of advocacy through Baby Hearts Press, a publishing company she founded to offer resources for families dealing with congenital heart defects. Both Emily and Anna emphasize the transformative power of personal narratives in literature, offering hope and strength to those in similar battles. Together, they explore the challenges of accurately representing chronic illnesses in media and the significant impact of personalized doctor-patient relationships, encouraging listeners to become vocal champions for their health needs. Our community extends beyond the airwaves with the launch of an innovative Discord channel, inviting listeners to engage directly with podcast guests like Hope, Rita Scoggins, and Megan Tones. This episode also teases an upcoming interview with Dr. Paul Grossfeld, who will discuss groundbreaking genetic discoveries related to heart conditions. With a focus on building supportive networks and fostering understanding through stories, we invite you to join us as we navigate personal advocacy and collective empowerment in the heart health community. Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Uniting Communities for Better Heart Care Outcomes with Kate Doherty-Schmeck 34:12
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Play Later Play Later Lists Like LikedSend us a text After 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 advocating for improved healthcare access. From the emotional encounter in a Guatemalan hospital to powerful events in Barcelona and Washington, D.C., discover how communities are coming together to fight disparities and ensure that every child receives the care they deserve. As the episode unfolds, I offer encouragement and resources for those touched by congenital heart disease. Whether it's through volunteering with Global ARCH or becoming an empowered advocate, there are myriad ways to contribute to this vital cause. More than just stories, these narratives serve as a clarion call for action, reminding us all of the strength found in community and the enduring spirit of advocacy. Remember to tune in every Tuesday for new episodes filled with heartwarming stories and invaluable insights. Global ARCH link: https://global-arch.org/ &Mamatoo: A Dash of Love: https://www.andmamatoo.com/home Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 2024 Top Ten "Heart to Heart with Anna" Episodes & More! 21:08
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Play Later Play Later Lists Like LikedSend us a text Can 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 moms like Rita Scoggins. Be inspired by advocates such as Deanna Altomara and Meagan Houpt, who continue to break barriers. Celebrate fitness and perseverance with Ben Johnson's triumph over tetralogy of Fallot, and witness Marina Lohri's transformation from survivor to heart community supporter. This episode serves as both a heartfelt reflection and an exciting preview of what's to come on Heart to Heart with Anna in 2025. Top Ten Episodes: #10 https://tinyurl.com/H2HAnna446 #9 https://tinyurl.com/H2HandChapter1 #8 https://tinyurl.com/H2HwAnna431 #7 https://tinyurl.com/H2HwAnna442 #6 https://tinyurl.com/H2HMeaganHouptCh3and4 #5 https://tinyurl.com/H2HwAnna444 #4 https://tinyurl.com/H2HwAnnaE434 #3 https://tinyurl.com/H2HwAnna466 #2 https://tinyurl.com/H2HwAnna443 #1 https://tinyurl.com/MarinaLohri Link to Mended Little Hearts Heart Month Activities: https://tinyurl.com/MLHFeb2024 Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Celebrating 11 Years: Heartfelt Reflections and Future Innovations in Heart to Heart with Anna 49:48
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Play Later Play Later Lists Like LikedSend us a text After 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 scars and embark on bilingual episodes for CHD families in South Africa. We also chat about potential guest experts, including cardiologists who specialize in electrophysiology and transplants, and an intriguing idea about Lyme disease's impact on heart health. These diverse topics promise to enrich our conversations and expand our understanding of the heart's mysteries. Experimentation and innovation are at the heart of our future plans. I'm contemplating format changes, such as integrating personal stories and community news segments to keep our listeners engaged. The idea of varying the podcast's frequency presents its own challenges and opportunities, and I share reflections on the experience of running a daily podcast. With the potential for live shows and guest hosts, we're excited to keep the spirit of collaboration alive, ensuring our podcast remains a vibrant and dynamic space for shared experiences and support. Join us in celebrating the power of community and the exciting journey ahead! Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Inside HeartWorks: A New Era in Heart Disease Treatment 41:12
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Play Later Play Later Lists Like LikedSend us a text Unlock 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 heart disease. Discover how HeartWorks is turning obstacles into opportunities through a data-driven cooperative platform. This patient-owned model is not only increasing enrollment in clinical trials, but also creating a collaborative network of institutions across the nation. From engineering heart muscle cells from skin biopsies to making clinical trials more accessible, HeartWorks is revolutionizing the way we think about congenital heart disease care. Tune in to learn how you can support these efforts and contribute to a brighter future for individuals of all ages affected by congenital heart conditions. Rachael’s episode: Navigating Life with HLHS and Marfan Syndrome: Rachael’s Powerful Story: https://tinyurl.com/393hbmrm Dr. Tim Nelson’s other “Heart to Heart with Anna” appearances: Advancements in Stem Cell Therapies and Research for HLHS Heart Warriors: https://hearttoheartwithanna.buzzsprout.com/62761/episodes/494353-advancements-in-stem-cell-therapies-and-research-for-hlhs-heart-warriors The Use of Stem Cells in Treatment for Hypoplastic Left Heart Syndrome (HLHS): https://hearttoheartwithanna.buzzsprout.com/62761/episodes/9949984-the-use-of-stem-cells-in-treatment-for-hypoplastic-left-heart-syndrome-hlhs HeartWorks Update 2023: https://hearttoheartwithanna.buzzsprout.com/62761/episodes/12191542-heartworks-update-2023 HeartWorks: https://heartworksinc.org/ The Co-Op: https://heartworksinc.org/coop Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Fit and Fearless: Defying Limits with Tetralogy of Fallot 38:15
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Play Later Play Later Lists Like LikedSend us a text Ever 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 trainer and self-monitoring, Ben exemplifies how managing health proactively can lead to a robust and fulfilling life, inspiring others with heart conditions to pursue their ambitions confidently. The episode doesn't just stop at physical well-being. We explore the significant link between exercise and mental health, sharing personal triumphs over post-surgical discomfort and the incredible benefits of targeted workouts. From stretching and strengthening exercises to the profound impact of endorphins, discover how maintaining an active routine can elevate mood and reduce anxiety. Encouraging inclusivity in physical activities, we stress that everyone, irrespective of physical limitations, can find joy and freedom in movement. Join us in fostering a community of heart warriors, advocating for empowerment, and cherishing each milestone along our shared journeys. Ben Johnson's contact information: https://tinyurl.com/y9yw53nj Ben's stretching episode for lats: https://youtu.be/tlkjkpt9tE8 Ben's YTWL exercise: https://www.youtube.com/watch?v=5pGqzU0y6yk Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 October 2024 Heart to Heart Live: From Trick-or-Treat to Compassion Fatigue 40:09
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Play Later Play Later Lists Like LikedSend us a text Do 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’s both cautious and filled with connection through shared medical experiences. Our conversation is a heartwarming reminder of the bonds formed between parents and children, especially when magic and medicine intersect. Finally, we address the often-overlooked emotional toll of compassion fatigue. With stories from heart camps and non-CHD friendships, we explore the challenges of maintaining relationships while living with ongoing health issues. Rita reflects on a memorable live show, demonstrating how our means of connecting have evolved. The conversation serves as a beacon for understanding and connection, underscoring the profound need for community support. We invite listeners to contribute their insights and stories, enriching the dialogue and reinforcing the shared journey of the CHD community. Helpful Links: The Rita, Victoria and Heidi Scoggins' episode: https://tinyurl.com/3Scoggins Amy Erhart's first Heart to Heart with Anna episode: https://www.buzzsprout.com/62761/episodes/15810923 One of Michael Liben's Heart to Heart with Anna episodes: https://www.buzzsprout.com/62761/episodes/736588 Compassion Fatigue Episode: https://www.buzzsprout.com/62761/episodes/736588 Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 From Survivor to Supporter: Marina Lohri's Tricuspid Atresia Journey in Congenital Heart Care 34:48
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Play Later Play Later Lists Like LikedSend us a text Meet 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 professionals. Marina’s story is a testament to the importance of specialized care and the expertise found at top hospitals in Switzerland. From finance to the medical field, Marina's career journey is a testament to aligning work with personal values and health needs. As she shares her transition to atHeart Medical, a startup focused on congenital heart defects, Marina highlights the rewards of working in a supportive environment that truly understands the challenges of living with CHD. Her advocacy extends beyond her professional life, as she continues to inspire others with similar heart conditions to pursue their passions and find purpose in their careers. Marina’s resilience shines through as she navigates life's challenges with a positive attitude and a commitment to the CHD community. Helpful Links: atHeart Medical website: https://atheartmedical.com Support Organizations: Mended Hearts: https://mendedhearts.org (In German) Herznetz: https://www.herznetz.ch/ Fontanherzen: https://fontanherzen.ch/ Swiss Heart: https://swissheart.ch/ Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Unlocking Neurodevelopmental Breakthroughs: Impact of CHDs and Parental Influence 43:37
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Play Later Play Later Lists Like LikedSend us a text Unlock 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. Cultural perceptions of disabilities are also on the table, emphasizing the importance of culturally sensitive approaches tailored to diverse communities, ensuring all families receive the understanding and assistance they deserve. Finally, we shed light on the crucial connection between parental mental health and a child's developmental journey. Understand the nuances of capturing accurate baselines in neurodevelopmental assessments for children with CHD and why repeat evaluations are essential. As we discuss the emotional rollercoaster faced by parents, we stress the value of community resources and social media groups in offering support. Join us to appreciate the profound impact of parental well-being on a child's health trajectory and learn strategies for balancing the demands of caregiving with the necessity of self-care. Dr. Ilardi's previous "Heart to Heart with Anna" appearance: https://tinyurl.com/DawnIlardi2014 Dr. Ilardi's website: https://www.pedneurocenter.com Dr. Ilardi's email: DawnIlardi@pedneurocenter.com Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Heart to Heart LIVE : An Open Mic with Anna and Her Community 51:43
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Play Later Play Later Lists Like LikedSend us a text How 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 community effort behind each episode, evolving from personal contacts to listener-generated suggestions. This episode also offers a deep dive into the emotional landscape of CHD families. Special guests Meg Didier and Annie Ulchek, HLHS survivors, discuss the unique challenges they face. We cover a range of sensitive topics such as the role of fathers, the experiences of career moms, and the emotional toll on siblings. Discover how CBD and THC are being used for anxiety and pain management, and meet a father who opens up about the scars left by navigating the challenge of raising a child with a CHD while also parenting two heart-healthy children. We cap off by emphasizing the importance of awareness initiatives like placing AEDs in schools and invite you, our listeners, to contribute your stories and feedback for future projects. Previous episodes mentioned in this podcast episode: The Courageous Chronicle of HOpe: From Heart Surgery to Self-Discovery https://www.buzzsprout.com/62761/episodes/15027473 Congenital Heart Defects and Gender Identity: https://www.buzzsprout.com/62761/11506572 LBGTQ+ and the CHD Community: https://www.buzzsprout.com/62761/episodes/11968012 Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Exploring the Therapeutic Power of Writing with Megan Tones and Sheri Turner 47:15
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Play Later Play Later Lists Like LikedSend us a text How 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 with themes of grief, loss, and support. Sheri shares her personal journey of questioning faith after the devastating loss of her son Thomas, highlighting the importance of validating the emotions of bereaved parents. We discuss the impact of sharing these deeply personal stories and Anna also announces how she and Sheri will be co-editing "The Heart of a CHD Angel" which will offer support and encouragement for bereaved CHD parents. Megan and Sheri’s insights encourage potential writers to join the Scribophile group for support and feedback, ensuring their voices are heard. As we wrap up, we emphasize the significance of community advocacy and encourage listeners to leave a review, helping more people in the CHD community discover these stories of resilience and hope. Helpful links: Baby Hearts Press for more information about upcoming books https://www.babyheartspress.com Scribophile group for anthology contributors https://www.scribophile.com/groups/heart-to-heart-writing-group Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 From Diagnosis to Advocacy: The Brave Little Hearts South Africa Story 45:08
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Play Later Play Later Lists Like LikedSend us a text What 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 listeners a raw, unfiltered look into the challenges of navigating a child's severe health crisis. Cultural stigmas and the critical importance of pulse oximetry in early CHD detection form another essential part of our discussion. We explore the efforts of advocating for legislative changes to make this life-saving test mandatory, sharing personal stories that highlight ongoing struggles and successes. Concluding with a heartfelt tribute to Fareed Matthews, whose enduring legacy continues to inspire and support families through Brave Little Hearts South Africa, this episode is a deeply moving testament to the power of parental love, advocacy, and community in the face of congenital heart defects. Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Unexpected Diagnoses: DiGeorge (22q11.2 deletion) Syndrome in the Lawrence Family 34:30
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Play Later Play Later Lists Like LikedSend us a text What 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 experiences at Boston Children's Hospital. Regina's advocacy work within the CHD community also offers a passionate perspective on why genetic testing is paramount. This episode promises to leave you with a profound understanding of DiGeorge syndrome and the unbreakable spirit of a family united in their fight. Link to The CHC Podcast: Congenital Heart Conversations: https://tinyurl.com/CHCPodcastApple Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Discovering a Myocardial Bridge at 65: Jeff's Journey to Heart Health Advocacy 31:47
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Play Later Play Later Lists Like LikedSend us a text Have 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 underdiagnosed conditions. From the importance of self-advocacy in medical settings to the need for better education in medical schools, Jeff's mission is to use his "bonus time" to make a positive impact on the lives of others. Listen in to learn about the life-changing potential of surgical intervention and the power of recognizing and acting on heart-related symptoms. Helpful Links: Jeff's Imperfect Heart podcast: https://www.myimperfectheart.com/ Stanford's Myocardial Bridge Program: https://stanfordhealthcare.org/medical-conditions/blood-heart-circulation/myocardial-bridging.html We're Rolling Studios' Instagram page: https://www.instagram.com/wererollingstudios/ Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 From Heart Block to Myotonic Dystrophy: A Survivor's Tale 33:30
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Play Later Play Later Lists Like LikedSend us a text What 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 interconnected health issues. Self-advocacy emerges as a crucial theme throughout this episode. Gwenyth's experience underscores the necessity of seeking second opinions and consulting specialists to unravel the complexities of managing multiple health conditions. We delve into her daily strategies for coping with myotonic dystrophy, including medications, physical therapy, and mobility aids, and explore the emotional and mental resilience required to navigate such a challenging medical landscape. This episode is a powerful testament to perseverance, the importance of support, and the relentless pursuit of well-being. Helpful Links: Baby Hearts Press (for The Heart of a Heart Warrior): https://www.babyheartspress.com Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Navigating Life with HLHS and Marfan Syndrome: Rachael's Powerful Story 31:44
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Play Later Play Later Lists Like LikedSend us a text Discover 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 heart conditions. Her late diagnosis in her twenties brings a poignant perspective on the emotional reactions of her parents and how they coped with the news, underscoring the importance of a robust support system. From a seemingly normal childhood filled with sports, singing, and dancing, to the shocking discovery of her condition following severe chest pain, Rachael's story is a testament to the human spirit's endurance. The medical community's awe at Rachael's case highlights the rarity and complexity of congenital heart defects like HLHS. Rachael's experience underscores the importance of community support and the strength she’s found in connecting with others facing similar challenges. Tune in to hear her express gratitude for these connections and learn how her journey may soon be shared in a book about resilience. Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Chapter 10: Life Lessons from Congenital Heart Defects: Stories of Hope and Resilience 35:26
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Play Later Play Later Lists Like LikedSend us a text What 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 threatening to derail dreams—until the compassionate Dr. Hurley steps in. Experience the harrowing and hopeful moments that underscore the necessity of perseverance, advocacy, and compassionate medical care in overcoming life-threatening health challenges. We also benefit from both Emily's and Allison's reflections on what they've learned growing up with heart defects. We close this chapter, and this episode, by exploring the unique psychological and emotional hurdles parents face when raising children with congenital heart defects. We discuss how the term "heart warrior" instills hope and courage amidst the unpredictability of chronic illness. Reflecting on the transformative advancements in pediatric cardiology, the collaborative efforts between healthcare professionals, and the unyielding support from parents, this chapter is a heartfelt tribute to the resilience and achievements of heart warriors and their families. Tune in to be inspired by stories that showcase the enduring spirit and remarkable strength of the congenital heart community. To buy this book, visit Baby Hearts Press (https://www.babyheartspress.com) Become a podcast subscriber: https://www.buzzsprout.com/62761/support Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Chapter 9 of "The Heart of a Heart Warrior" Featuring Heart Warrior Authors 46:38
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Play Later Play Later Lists Like LikedSend us a text How 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 can be a beacon of hope, especially for parents of children with CHD. Meanwhile, Dr. Phillips' narrative based on "When I Wished Upon a Star" showcases the profound impact of mentorship and personal connections, enriched by his encounters with child actor Jeremy Miller. As we wrap up, Megan and I reflect on the invaluable contributions of Baby Hearts Press, a cornerstone for the CHD community since 1996. We discuss our experiences with the "Heart of a Heart Warrior" series and urge listeners to advocate for these pivotal resources at their local libraries. This episode is a testament to the power of community, encouraging everyone to draw strength from shared stories and support each other through the most challenging journeys. Join us for an episode that promises inspiration, empowerment, and a reminder that no one faces their battles alone. To buy this book, visit Baby Hearts Press (https://www.babyheartspress.com) Become a podcast subscriber: https://www.buzzsprout.com/62761/support Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 "The Heart of a Heart Warrior" Chapter 8 Featuring Megan Tones and Julie Kerr 41:33
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Play Later Play Later Lists Like LikedSend us a text Ever 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. Experience an imaginative world where Elise and Peter's fluid shifts between human and animal forms highlight the magical nature of their journey. This episode is brimming with creativity, transformation, and heartwarming connections, perfect for aspiring writers seeking inspiration and guidance on contributing to Baby Hearts Press anthologies. Don't miss out on the chance to immerse yourself in these incredible narratives and the supportive platform they offer! Links mentioned in the episode: Baby Hearts Press — https://www.babyheartspress.com Scribophile — https://www.scribophile.com Anna and Megan's writing group on Scribophile: https://www.scribophile.com/groups/heart-to-heart-writing-group/ To get a copy of The Heart of a Heart Warrior: Volume 3 Transformation , visit the Baby Hearts Press website at: https://www.babyheartspress.com Become a podcast subscriber: https://www.buzzsprout.com/62761/support Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Heart Warrior Transformations: From Challenges to Creative Triumphs 27:43
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Play Later Play Later Lists Like LikedSend us a text Have 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 not only the living artists but also those who have passed away, celebrating their enduring legacy through their art. Organizations like Hearts Unite the Globe play a pivotal role in supporting these heart warriors, amplifying their voices and their art. The episode also touches on the critical role of parental advocacy and support. I share my personal journey navigating life with a child born with hypoplastic left heart syndrome (HLHS), which led me to write books and help form the Milagros support group. Inspired by these experiences, I continue to work on new volumes that capture the resilience and spirit of heart warriors, with Megan by my side as co-editor. Join us as we celebrate these empowering stories, remind everyone that they are not alone, and look forward to connecting with our listeners next week. To get a copy of The Heart of a Heart Warrior: Volume 3 Transformation , visit the Baby Hearts Press website at: https://www.babyheartspress.com Become a subscriber: https://www.buzzsprout.com/62761/support Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Navigating Parenthood with a Congenital Heart Defect During Covid-19: Amelia Woods' Journey 30:24
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Play Later Play Later Lists Like LikedSend us a text What 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 Henderson's future. Together, they reveal their strategies for navigating the postpartum period and the significance of familial support during such trying times. In this heartfelt episode, we also spotlight Amelia's advocacy within the congenital heart defect (CHD) community. By writing a book, "The Boy Born Brave," Amelia is a beacon of resilience and activism. We delve into actionable steps you can take to raise awareness and support the CHD community, including nonprofit fundraisers and heart walks. Tune in to learn how combining unique talents can drive nonprofit success and how you, too, can make a difference in the lives of children with CHD. Information Mentioned in the Episode: Amelia's website: https://heartlikeamother.com Amelia's shop: @heartlikeamother.shop Amelia on Instagram: @heartlikeamother Become a subscriber: https://www.buzzsprout.com/62761/support Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Navigating Romantic Life with a Heart Condition: Insights from Dr. Corinne Smorra 38:13
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Play Later Play Later Lists Like LikedSend us a text What 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 importance of building connections beyond traditional work and school environments. Discover how modern technology like FaceTime, instant messaging, and Zoom can be leveraged to maintain relationships without physical strain. Energy management and setting specific times for social activities are crucial for avoiding burnout, and we provide tips on balancing social life and health seamlessly. Our conversation goes further to address the evolving landscape of dating, highlighting the transition from close-knit community connections to today's broader but sometimes isolating online experiences. Dr. Smorra’s virtual support group offers a haven for those navigating the dating world with CHD, covering topics like handling insecurities about visible scars and inclusivity for the LGBTQ community. Through role-playing and peer support, this group provides practical tools and emotional backing for everyone involved. Tune in for an insightful discussion on forming genuine connections, seeking inclusivity, and finding support within the CHD community. Link mentioned in this episode: Dr. Corinne Smorra's website: https://www.heartandmindcounseling.com Dr. Corinne Smorra's previous Heart to Heart with Anna episode: https://www.buzzsprout.com/62761/11148131 Become a subscriber: https://www.buzzsprout.com/62761/support Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 James Robinson's Emotional Odyssey: Love and Loss in a Heart Family 43:43
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Play Later Play Later Lists Like LikedSend us a text What 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 openness. The emotional journey reveals lessons about life, love, and humanity learned through the lens of a family's extraordinary experience with severe health issues. Finally, we highlight the vital role of the hospital ecosystem in preserving humanity. Through heartfelt anecdotes, James discusses the indispensable support from nurses, therapists, and other professionals who added depth and compassion to Nadav's care. This episode also explores the lasting impact of connecting with a community of adult congenital heart disease survivors, offering solace and continuity for those affected. Join us for a compelling and heartfelt conversation that underscores the power of shared experiences and the transformative strength that love and community bring in times of profound adversity. Helpful Links Mentioned in the Episode: James Robinson's website: https://morethanamemoir.com/ Leigh Kamping-Carder's Interview with James Robinson: https://theheartdialogues.substack.com/p/meeting-adults-with-congenital-heart-disease Become a subscriber: https://www.buzzsprout.com/62761/support Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Heartfelt Battles to Artistic Revelations with Amy Milz 30:40
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Play Later Play Later Lists Like LikedSend us a text Amy 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 navigating the complexities of Congenital Heart Disease (CHD), is more than a visual narrative; it's a testament to the therapeutic power of creative expression. Her experiences, which extend to the intimacy of her marriage and the importance of self-advocacy, are woven into a larger canvas of life lessons that resonate with all who face their own battles. Amy Milz, through her perseverance and passion, paints a picture of hope and reminds us of the beauty that can emerge from life's most challenging trials. Become a subscriber: https://www.buzzsprout.com/62761/support We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)! Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Mother's Day Reflections: The Valor and Vitality of Heart Moms 26:28
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Play Later Play Later Lists Like LikedSend us a text When 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 as they speak candidly about their experiences—moments of profound loss and the critical importance of support systems. It's an ode to the unwavering courage of families facing CHD and a beacon of hope for those who will join our ranks. Celebrate Mother's Day with us, and feel the solidarity of heart moms united by love and resilience. Special thanks to Hollie Stephenson, Regina Lawrence, Sheri Turner, Eileen Pearlman, Victoria Baerg, and Kimberly Russell for sharing their experiences, memories and/or advice with us. Sites or shows mentioned in this episode: Hollie's show: https://www.buzzsprout.com/62761/14985018 Baby Hearts Press: https://www.babyheartspress.com/ Become a subscriber: https://www.buzzsprout.com/62761/support Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 The Courageous Chronicle of Hope: From Heart Surgery to Self-Discovery 34:01
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Play Later Play Later Lists Like LikedSend us a text When my daughter Hope graced the podcast with her presence, her story wasn't just a chronicle of living with a single ventricle heart at 29—it was a profound testament to her strength amid her gender transition. Our conversation unveils the seamless integration of her heart health with her journey of self-discovery, all while providing tangible advice for those who feel the pull of the pen and the thrill of authorship. Hope's insights on her upcoming book light the way for aspiring writers, proving that even with life's hurdles, one's voice and story are paramount. Flipping through the pages of Hope's past, we're reminded of the days when storytelling was a fledgling passion, cultivated through pen pals and children's magazines. The revelation of a bucket list in college sparked a monumental shift from engineering to writing, a decision that charted the course for my current literary adventures. Sharing these moments isn't just about nostalgia—it's about tracing the delicate threads that weave together to form a writer's identity, culminating in the excitement of discussing her latest book. For anyone out there who's ever doubted the path of a writer, let this episode serve as a beacon. We'll journey through the landscape of crafting narratives, the role of supportive writing communities, and the reality of financial expectations in the writing world. The serendipity of connecting with a publisher keen on LGBT+ stories is a reminder that sometimes, the stars align in unexpected ways, providing the chance to see one's work in the hands of eager readers. Join us for a heart-to-heart that celebrates the written word and the unwavering spirit of those who dare to write it. Hope's previous Heart to Heart with Anna Appearances: Congenital Heart Defects and Gender Identity: https://www.buzzsprout.com/62761/11506572 Celebrating 300 Episodes of “Heart to Heart with Anna" https://www.buzzsprout.com/62761/8240177 Sports and Extra-Curricular Activities for CHD Survivors https://www.buzzsprout.com/62761/398939 Surviving a Long Hospital Stay https://www.buzzsprout.com/62761/398934 Writer's League of Texas Agents and Editor's Conference (2024) https://writersleague.org/calendar/2024-agents-editors-conference/ Armadillocon (2024) https://armadillocon.org/d46/ Rattling Good Yarns https://rattlinggoodyarns.com/ Slug Tribe http://www.slugtribe.org/ Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Embracing Life's Pulse Amidst HLHS and PLE Hurdles with Hollie Stephenson 36:18
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Play Later Play Later Lists Like LikedSend us a text Witnessing your child's bravery and resilience as they navigate a life-altering condition like hypoplastic left heart syndrome (HLHS) is both harrowing and inspiring. Hollie Stephenson joins Anna to share the profound story of her son Tom, who not only fought through the early challenges of HLHS but also the complex battle with protein-losing enteropathy (PLE) in his later years. Her vivid accounts from Tom's diagnosis in utero, through his surgeries, and onto his impressive transition into adulthood, working in politics, is nothing short of remarkable. Their journey underscores the unpredictable nature of congenital heart defects and the critical importance of vigilant medical care. Through Tom's story, we uncover the myriad of long-term treatments and daily hurdles that come with managing PLE. We discuss the innovative treatments at the Children's Hospital of Philadelphia (CHOP) that led to significant improvements in his health and share insights from another patient's experience where a medication for Crohn's disease offered unexpected relief. These narratives illuminate the evolving field of pediatric cardiology and the crucial balance of medication management, driving home the message that children with heart conditions can and should lead full, joyous lives. Parenting is an art—especially so when your child has a heart condition. Our conversation traverses the delicate art of letting go, allowing our children to taste independence and embrace life's experiences, from participating in sports to taking on careers. We explore the shift from advocacy to supporting our children's autonomy, the complexities of medication management into adulthood, and the emotional journey that comes with each milestone. Hollie and Anna share their personal challenges and triumphs, offering a heartfelt insight into what it means to parent through uncertainty with hope and courage. Join us for an episode that's not just about the struggles, but also the extraordinary victories that come with raising a child with a heart condition. Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Navigating the Emotional Landscape of Raising Children with Congenital Heart Defects 39:06
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Play Later Play Later Lists Like LikedSend us a text When your child's heartbeat is a symphony laced with irregularities, every moment becomes a measure of uncertainty. This is the world heart moms like myself, Anna Jaworski, and my guest Kelsi Rogers live in every day. Join us as we peel back the curtain on the mental marathon of raising children with congenital heart defects (CHD). Our raw conversation plunges into the depths of hypervigilance, the delicate nature of our children's health, and the language that both describes and defines their conditions. Sharing from our hearts, we expose the often-unspoken mental toll of the constant fear and the struggle to find a semblance of normality while fiercely protecting our children's lives. The battle doesn't end with personal struggles; the war against CHD is fought on the frontlines of research and advocacy as well. In this heartfelt exchange, Kelsey and I explore the gap in CHD research funding and the misleading statistics that mask the true prevalence of these heart conditions. We dissect the critical need for comprehensive newborn cardiac screening to catch these silent afflictions early, recounting stories that underscore the urgency and importance of this cause. Our plea for increased education and advocacy rings clear, with a hope to catalyze change in how CHD research and screening practices are approached and executed. Concluding on a note of hope, we cast a light on initiatives forging paths towards groundbreaking treatments, including the exciting prospects of in-utero solutions and the creation of privacy-preserving registries for targeted research through HeartWorks. By sharing personal anecdotes, we underscore the severity of electrical heart issues and rally for greater support and recognition. It's not just a podcast; it's a community coming together every Tuesday at noon Eastern time, sharing a commitment to empower and support the CHD community. Your participation breathes life into our mission, reinforcing the collective heartbeat of families touched by congenital heart disease. Links mentioned in this podcast: HeartFelt: https://www.facebook.com/heartfeltscreening Tiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrot HeartWorks: https://www.hlhsconsortium.org/heartworks/ Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/new Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Heart Mom Kelsi Rogers on Jett's Electrical Problems with His Heart 49:25
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Play Later Play Later Lists Like LikedSend us a text This episode of "Heart to Heart with Anna" features a very special heart mom. Kelsi Rogers talks about the surprising circumstances around her son's heart condition. Born with an electrical problem in his heart, Jett has already faced life-and-death situations several times in his short life. Not even three years old yet, he has undergone an ablation and an open-heart surgery. Tune in to find out what kind of heart defect Jett has, why the ablation was so extensive, and what kind of surgery eventually saved his life. Following the interview with Kelsi Rogers, co-editors Megan Tones and Anna Jaworski read the last half of Chapter Seven: Facing My Mortality from their new book The Heart of a Heart Warrior Volume Two: Endurance . Links mentioned in this podcast: HeartFelt: https://www.facebook.com/heartfeltscreening Tiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrot Baby Hearts Press: https://www.babyheartspress.com (for more information on the book The Heart of a Heart Warrior and more!) To sign up for a Baby Hearts Press Book Study, visit our website here: https://www.babyheartspress.com/volume-2 Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/new Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 An Author for CHD Adults with Learning Disabilities: Deanna Altomara 58:07
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Play Later Play Later Lists Like LikedSend us a text As an author myself, I understand the power of stories to heal and inspire. That's why I'm thrilled to introduce Deanna Altomara, who created "Chrysalis," a book to help people facing open-heart surgery. Born with a congenital heart defect herself, Deanna understands what it means to have had open-heart surgery. Deanna's tale is a testament to how health education and storytelling can intertwine to provide solace and strength to those facing similar battles. Navigating the complex maze of medical procedures and developmental disabilities can be daunting for teens and their families, but this episode illuminates a path of understanding. It was essential for Deanna to create a book for her cousin, who was born with a heart defect and who also deals with developmental disabilities. We delve into the meticulous creation of age-appropriate resources that educate and resonate, merging factual information with fun. Discover how collaboration with an illustrator brought forth a book that captivates without patronizing, and how such tailored storytelling can touch the hearts of its readers and bridge significant gaps in resources. Rounding out our heartfelt talk, we share insights into the creation of indispensable tools that guide parents through the intricacies of surgeries and special needs. In the third segment of the podcast, you'll hear my co-editor Megan Tones and me, as we continue reading from The Heart of a Heart Warrior Volume Two Endurance . This week, we cover the first half of Chapter 7 which includes David Franco's harrowing recovery journey which underscores the essence of resilience. This chapter is entitled "Facing My Mortality" and you'll hear essays by Becca Atherton as she confronts life's fragility and her impending mortality. We also hear from Margaret Raymond as she describes how her mental health has been challenged over time due to living with her congenital heart defects. Despite the inevitable, we find a collective strength in this chapter. Join our supportive community, where every Tuesday, we offer a dose of inspiration and the comforting reminder that no one walks this path alone. You can find Deanna on @d.scribing.stories on Instagram and https://deannaaltomara.com To sign up for a Baby Hearts Press Book Study, visit our website here: https://www.babyheartspress.com/volume-2 Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Shattering Stereotypes in the World of Down Syndrome and Congenital Heart Defects 1:06:42
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Play Later Play Later Lists Like LikedSend us a text When Ellen Boyer's voice joins the conversation, the room lights up with an array of heartfelt stories and powerful messages. Together, we celebrate World Down Syndrome Day by shattering stereotypes and trumpeting the accomplishments of those with Down Syndrome. From the awe-inspiring feat of Chris Nikic, the first athlete with Down Syndrome to conquer an Ironman triathlon, to the everyday triumphs of individuals leading vibrant, fulfilling lives, our dialogue serves as a rallying cry for inclusion and appreciation of every person's inherent worth. The legacy of Brett Boyer shines on, as we discuss the foundation in her memory that advocates for CHD research and support, reminding us how one life can ripple through the hearts of many. Co-editors Megan Tones and Anna Jaworski continue reading from The Heart of a Heart Warrior: Volume 2: Endurance. Motherhood, with all its joys and challenges, takes on profound new dimensions when interwoven with congenital heart defects (CHD). The narratives of Megan Hanshew, Gwenyth Murphy, and others paint a poignant picture of resilience and transformation. We also celebrate the active lives of those like Tracie Wendorf-Salgado, living with pacemakers yet refusing to be held back, and Kimberly Russell, whose journey through CHD led to the joyous adoption of her daughter. Join us for an episode that's as much about courage as it is about compassion. Hear the raw, unfiltered experiences of those who not only survive but thrive despite the presence of CHD. Be inspired by Kimberly Russell's volunteer work in education advocacy, and be moved by Tracie Wendorf-Salgado's near-miss on the highway, a stark reminder of the fragility of life and the indomitable human spirit. This is an ode to the tenacity of the heart, both literal and metaphorical, and an invitation to walk alongside these extraordinary individuals through their remarkable journeys. Links mentioned in this episode: The Brett Boyer Foundation: https://www.thebrettboyerfoundation.org/ Baby Hearts Press: https://www.babyheartspress.com Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Ellen Boyer and World Down Syndrome Day 2024 & Volume Two: Endurance! 1:02:02
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Play Later Play Later Lists Like LikedSend us a text When Ellen Boyer graced our show with her story of love and resilience, it was clear that her daughter Brett, who blessed the world with her presence despite Down syndrome and a congenital heart defect, has sparked a legacy that transcends every stereotype. Through the Brett Boyer Foundation, Ellen's dedication to challenging limitations and advocating for CHD research is a beacon of hope that lights up our latest episode. As we celebrate World Down Syndrome Day, we invite you into our heartwarming discussion and extend an open hand for you to join us in spreading the message for World Down Syndrome Day: Stop the Stereotypes. In the 2nd and 3rd segments of the episode, you'll hear co-editors Megan Tones and Anna Jaworski reading from The Heart of a Heart Warrior Volume 2: Endurance. This week they're reading essays from Chapter 5 in anticipation of the next Baby Hearts Press Book Study, which starts on World Down Syndrome Day (March 21st) from 5-6 PM USA CDT. It's the personal journeys that often strike the deepest chord, and this chapter resonates with stories of tenacity and the transformative power of companionship. Listen to the heartening tale of Monica Mossey and her service dog Jax, whose bond exemplifies the extraordinary support that can come from our four-legged friends. The courage of Tracey Grasty, through multiple heart surgeries and life's relentless challenges, will remind you of the strength that lies within our community, and the remarkable resilience we can muster when faced with life's daunting obstacles. We round out the conversation by stepping into the shoes of those whose professional lives are shaped by their personal experiences with congenital heart disease. From Victoria Scoggins' journey into healthcare administration to Megan Tones' research in rare diseases, these narratives showcase the depth of impact that personal health can have on career choices and the contributions these individuals make to the healthcare field. We end the chapter with an essay by heart warrior and nurse, Roslyn Rivera--a nurse whose practice spanned the globe. As your host, Anna Jaworski, I'm here to reaffirm that the power of advocacy and community is just a heartbeat away, and together, we can navigate the landscapes of the heart with courage, dedication, and hope. Websites mentioned in this episode: Baby Hearts Press: https://www.babyheartspress.com The Brett Boyer Foundation: https://www.thebrettboyerfoundation.org/ Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Learning about Anesthesia During Ablations & Volume Two! 41:07
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Play Later Play Later Lists Like LikedSend us a text In this episode of Heart to Heart with Anna we welcome Frank Jaworski back to the program. Frank shares information about anesthesia when patients go to the electrophysiology lab (EP lab), especially when they need to undergo an ablation. Frank is a certified, registered nurse anesthetist (CRNA) and he has been delivering anesthesia for over 23 years. One of his favorite departments to work with is the EP lab. In this episode, Frank shares some tips to help those in the congenital heart defect community reduce their concerns when visiting the EP lab, he offers some helpful questions patients can ask their anesthesia providers, and even shares some tips for how to reduce anxiety during their EP visits. The 2nd and 3rd Segments involve Anna reading from The Heart of a Heart Warrior Volume Two: Endurance. This is one of the newest books from Baby Hearts Press. This is the second in a 3-book series of essays and works of art by adults with congenital heart defects. In this podcast episode, Anna will read from the front matter of the book, including the Foreword, Preface, and Introduction. Baby Hearts Press is hosting a Book Study for those interested in meeting some of the contributors to ask questions, as well as an opportunity to share their own experiences related to the topics discussed in the book. The Book Study for Volume Two begins on Thursday, March 24th from 5-6 PM Central Daylight Savings Time and runs for 4 consecutive Thursdays. To get a ticket to attend for only $10 per session, visit https://www.babyheartspress.com. Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Embracing the Heartbeat of Motherhood: Meagan Houpt’s Adoption Journey 1:05:17
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Play Later Play Later Lists Like LikedSend us a text When Megan Houpt made the heart-wrenching decision to pursue adoption over pregnancy due to her heart condition, it struck a chord with me as a heart mom. Together, we unfold her narrative in this episode, navigating the complexities of adoption with a CHD. From the intricate dance of home studies to the emotional synergy with a birth mother, we journey through Megan's path to motherhood. The adoption landscape can be arduous, yet it's traversed with hope and culminates in the joyous arrival of Hunter Hart, a name rich with significance. (https://www.facebook.com/HLHSMeaganHoupt) In the second segment of the podcast, we continue reading from The Heart of a Heart Warrior Volume One: Survival. This week, we complete Chapter 3: Being Active with CHD. The courage of those facing congenital heart defects takes center stage as we share stories of triumph and transformation. Hear how heart warriors like and Alicia Lynch and Megan Tones find ways to be active, despite having complex congenital heart defects. Megan takes us on an Egyptian odyssey that defies the ordinary. Imagine scaling Mount Sinai and wandering amidst ancient temples, all while balancing the intricacies of medical needs with the thrill of adventure. Her narrative captures the essence of wanderlust, peppered with humor and humanity, proving that even with health challenges, the zest for exploration knows no bounds. Alicia inspires us with her journal entries which lead us from a time of despair to a time of rejoicing. In Chapter 4: CHDs Around the Globe Amy M. Le, Ellen Banoub, and Belen Blanton channel their battles into creating waves of change and offering a helping hand to others within the CHD community. Amy's pivot from a tech giant to a champion for indie writers, Ellen's leap from a CHD survivor to a beacon of support, and Belen’s recounting of finding God’s mission for her showcase the remarkable resilience and tenacity inherent in our human spirit. Join us, and let these tales of bravery, resilience, and the indomitable will to embrace life’s adventures inspire you. Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Resilience in Motion: The Unseen Struggles of Adult Life with Congenital Heart Defects 59:33
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Play Later Play Later Lists Like LikedSend us a text Navigating life with congenital heart defects (CHD) is a journey of resilience and emotional fortitude. As I converse with my fellow heart mom, Rita Scoggins, we unearth the layers of complexity that come with raising adult children affected by CHD. This episode goes beyond the clinical; it’s an intimate foray into the emotional and logistical preparations for life's greatest certainties, including power-of-attorney arrangements and will preparations, while also considering the implications for our adult children and beloved pets upon our passing. Segment 2 showcases co-editors Megan Tones and Anna Jaworski reading Chapter 2 of The Heart of a Heart Warrior Volume One: Survival The heart of the chapter beats to the rhythm of personal stories that exemplify the myriad ways individuals with CHD find identity and purpose. From Hope’s inspiring transition and embrace of her true self as a transgender woman, to Jason Crutchley's dedication to volunteerism, and Christie Sillman's leap into a nursing career, these narratives are a testament to the strength found in the CHD community. These journeys illuminate how our warriors, often dubbed so for their battles against physical conditions, also strive for agency and the power of choice in defining their lives. Segment 3 showcases the first two essays from Chapter 3 of The Heart of a Heart Warrior Volume One: Survival Physical activity, often seen as a mountain too high for those with CHD, emerges as a pinnacle of personal triumph in these essays. Lorrie Hill's career pivot, and Michael Hills' adaptation to sports outside his initial dreams, are stories that underscore the tenacity of the human spirit. These anecdotes are not just about overcoming limitations, but about redefining personal goals and embracing one's passions, all while living with the realities of a congenital heart condition. Join us for this heartfelt exploration of life's challenges and victories. Won’t you join us while we discuss these essays in our next Book Study? Co-editors Megan Tones and Anna Jaworski are joined by contributors to the book and others who want to discuss the topics raised in the book. These 1-hour sessions take place on Zoom. Visit Baby Hearts Press for more information. Did you miss hearing Chapter One or the Front Matter of the book? Here are the links: Front matter (Foreword, Preface, and Introduction): http://tinyurl.com/H2HwAnnaE434 Chapter 1: http://tinyurl.com/H2HandChapter1 Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Threads of Resilience Sewn by Heart Moms and Their Children with CHDs 58:22
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Play Later Play Later Lists Like LikedSend us a text Navigating the torrent of emotions that come with being a heart mom to an adult child, Rita Scoggins and I, Anna Jaworski, unfold the layers of our unique journey. Our intimate conversation traverses the evolution of care, from the hands-on nurturing of our children's younger years to the complexities of supporting their maturity and independence. We delve into the potent mix of pride and concern, sharing stories that resonate with anyone who understands the pull of a parent's heartstrings as their children, like Rita's daughter Victoria, and Anna’s daughter Hope, carve out lives shaped by both their challenges and triumphs. This episode continues with reading from The Heart of a Heart Warrior Volume One: Survival. In this episode, co-editors Megan Tones and Anna Jaworski, take turns reading essays from the book. In Chapter One we read the narratives of heart warriors who've faced body insecurities and the trials of scoliosis with courage. Laura Ryan's story, in particular, shines as a beacon of hope; her transformative experience at the waterslides in Lancaster, learning to embrace her surgery scars, offers a deep dive into the power of empathy and connection. We hear how individuals like Michael McKelvey and Dajah Scrivner channel their pain and resilience into poignant expressions of life with CHD. Our episode doesn't simply share stories; it offers a lattice of support, exploring how adaptive clothing and familial love can buoy spirits amidst adversity. As we discuss the importance of finding strength in community and the solace of shared experiences, we invite you to join us in a space that celebrates overcoming obstacles and the beauty of human connection. For all who walk the path with heart-defect warriors, this conversation is a testament to the enduring spirit and the ties that bind us all. Rita’s other podcast episodes : Rita, Victoria, and Heidi Scoggins on The CHC Podcast : ‘Taking Control of Your Heart Condition’ Rita as a Guest Host on Heart to Heart with Anna interviewing Laura Ryan. ‘ Heart Warrior Mom Raising Children to Adulthood’ Rita and Victoria Scoggins on Heart to Heart with Anna: ‘Congenital Heart Defect Awareness 2015’ Learn more about our The Heart of a Heart Warrior Volume One: Survival Book Study and join us to discuss the book and share your stories. Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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Heart to Heart with Anna
1 Heart Month News February 2024 and an Audiobook Surprise! 43:36
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Play Later Play Later Lists Like LikedSend us a text This episode of Heart to Heart with Anna involves news regarding Heart Month 2024. In this episode, you’ll learn about who our guest next week will be, how Congenital Heart Defect Awareness Day came to be and what it has evolved to. You’ll also learn about how Baby Hearts Press, a publishing company devoted to the CHD community, has a special sale for Heart Month and how we’ll be conducting a Book Study of Volume One of The Heart of a Heart Warrior . You’ll also learn about the new writers’ platform we’re working with to create some new books. Scribophile is a place for writers to come together to support one another. Join us in the Heart to Heart group for information for the CHD community. Lastly, I’ll be sharing some behind-the-scenes information about The Heart of a Heart Warrior , our Kickstarter campaign, and why I’ve decided to record the audiobook this month—and give it away freely on Heart to Heart with Anna. This episode features the front matter of the Kickstarter edition of the book. The Kickstarter edition of The Heart of a Heart Warrior contains the first three volumes in one hardcover edition of the book. In this podcast episode, you’ll hear me reading the poem that starts our book—‘I am a Miracle Child’ by Becca Atherton, the Dedication, Foreword, Preface, Acknowledgements, Introduction, and the opening to Volume One: Survival. Helpful Links: Baby Hearts Press Submission Page: https://www.babyheartspress.com/submissions Baby Hearts Press Bookstore: https://babyheartspress.myshopify.com/ Scribophile Heart to Heart Group: https://www.scribophile.com/groups/heart-to-heart-writing-group/ Victoria and Rita’s episode about CHD Awareness: http://tinyurl.com/VictoriaScoggins Support the show Anna's Buzzsprout Affiliate Link Baby Blue Sound Collective Social Media Pages: Apple Podcasts Facebook Instagram MeWe Twitter YouTube Website…
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