One Voice: United Against Congenital Heart Disease with Monique Kemp
Send us a textMonique Kemp's world turned upside down when her unborn son was diagnosed with an interrupted aortic arch at seven months of pregnancy. What followed was a harrowing journey through six open-heart surgeries, months of hospitalization, and the birth of something unexpected – a powerful vision for supporting other families facing similar challenges.From those early days sitting beside her newborn's hospital bed to founding Heart of Hope-Cape Town, Monique shares with raw honesty how she transformed her personal pain into purpose. Her support group, now running for 12 years, fills a critical gap she identified during those long hospital stays – medical staff trained to heal bodies, not necessarily to hold space for parents' emotional trauma.The conversation takes a dramatic turn when Monique reveals how her maternal instinct potentially saved her son's life. As Daniel entered his teen years, his complaints of pain were repeatedly dismissed as psychological by doctors who had 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_podcastsBaby Hearts Press: https://www.babyheartspress.comSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
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Building a Legacy: Transforming CHD Care in Pakistan
Send us a textFrom a family vacation that turned tragic to the creation of Pakistan's first specialized children's heart hospital, Ana Tanveer Abdullah's journey illustrates how profound loss can spark transformative change.When Ana's athletic, academically gifted brother Daniel collapsed unexpectedly at age 15, no one suspected a heart condition. Despite receiving a pacemaker after being diagnosed with cardiomyopathy, Danial passed away at 16 while awaiting a heart transplant in India. This devastating loss became the catalyst for an extraordinary mission.Together with her father and Farhan Ahmad (who also lost a child to congenital heart disease), Ana founded the Pakistan Children's Heart Foundation with an ambitious vision: to build the country's first specialized cardiac hospital for children. Through innovative fundraising campaigns inspired by Danial's athletic spirit and tireless advocacy, they've now achieved what once seemed impossible.The Children's Heart 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-pakistanPakistan Children's Heart Foundation (PCHF): https://pchf.org.pk/Project Danial: https://pchf.org.pk/cause/project-danial/Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
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No Cure, Just Courage: Navigating Life with Congenital Heart Disease
Send us a textWhat happens when you've spent your whole life thinking your heart condition was "fixed," only to discover it's actually a lifelong journey? Elle Pendrick shares this profound revelation that came after her fourth open-heart surgery, forever changing how she understood her congenital heart disease.Born in 1983 with complex CHD in rural Australia, Elle's early years were defined by long journeys to Sydney for medical care. Growing up as the only person with a serious cardiac condition in her small town of Wagga Wagga created an isolating experience—one that shaped her understanding of her own health. The shocking realization at age 21 that her heart disease was not cured but rather a lifelong companion became a turning point in her identity and purpose.Elle takes us through her remarkable transition from viewing CHD as something to hide to embracing it as part of her story. Her evolution into advocacy work led her to help develop Australia's groundbreaking Standards 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/B0DCV2TCQZElle’s Website: https://www.adultingwell.au/Elle’s Blog: https://www.adultingwell.au/BlogElle’s Instagram: https://www.instagram.com/adultingwell/Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
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Putting Around for a Purpose: Golf, Heart Warriors, and Small-Town Magic
Send us a textA broken wrist serves as an unexpected metaphor for the heart warrior's journey in this illuminating conversation with fundraiser and podcaster Amy Earhart. When Anna's recent accident left her with a titanium plate and a new perspective on recovery, it highlighted the resilience that characterizes the CHD community—adapting when our bodies say "enough" and finding creative ways forward.Amy Erhart brings this resilience to life through her remarkable story. Born with hypoplastic left heart syndrome in 1983, she's channeled her experience into creating meaningful change. Her "Putt Around Kalida" fundraiser transforms her small hometown into a mini-golf adventure where local businesses design elaborate putting greens—from a smoking firehouse to a church model that's been preserved for generations. What makes this event special goes beyond the $20,000 raised; it's the photos of local CHD children displayed at the town park, creating powerful moments of 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/2268461Anna's CHD Connects Hearts link: https://chdconnectshearts.com/products-list?am_id=annajaworski3819Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
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Marinas Reise mit angeborenem Herzfehler
Send us a textIn dieser speziellen deutschsprachigen Episode von 'Herz zu Herz mit Anna' spricht Jodi Alderfel mit Marina Lohri, die mit Trikuspidalatresie, ASD und VSD geboren wurde und eine modifizierte Fontan-Operation überlebte. Marina teilt ihre lebenslange Reise, von ihrer Herzoperation als Baby bis hin zu ihrer Karriere bei atHeart Medical, einem Unternehmen, das Geräte zur Behandlung von ASD entwickelt. Die Episode erörtert auch Marinas Erfahrungen mit Vorhofflimmern und einer Ablation im Jahr 2018. Marinas persönliche und berufliche Erfahrungen bieten wertvolle Einblicke für andere Patienten mit angeborenen Herzfehlern und zeigen, wie sie durch Mut und Entschlossenheit ein sinnvolles Leben führt.(Besonderer Dank geht an Jodi Alderfel, die uns in dieser Folge als Gastmoderatorin zur Seite stand.)In this special German-language episode of 'Heart to Heart with Anna,' Jodi Alderfel speaks with Marina Lohri, who was born with tricuspid atresia, ASD, and VSD and survived a modified 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-LohriSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
Revitalize your spirit and connect with the vibrant congenital heart defect (CHD) community through 'Heart to Heart with Anna,' the pioneering podcast that has been inspiring and informing listeners since 11-12-13. Join us as we dive deep into the personal journeys, triumphs, and challenges of Survivors, their loved ones, esteemed medical professionals, and other remarkable individuals within the CHD community.With unwavering dedication, our heartfelt conversations bring to light the stories that need to be heard. Gain invaluable insights, expert advice, and a sense of empowerment as we explore the multifaceted world of CHD. Our mission is to uplift, educate, and enrich the lives of every member of this incredible community.Embark on a transformative listening experience where compassion and understanding thrive. Discover the resilience and unwavering spirit that resides within each person touched by CHD. Together, let's build a community where support and knowledge flourish, bringing hope to the forefront.Tune in to 'Heart to Heart with Anna' and embark on a remarkable journey that will leave you inspired, enlightened, and connected to the beating heart of the CHD community.
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