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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

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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

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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!

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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

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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

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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

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Baby Blue Sound Collective

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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/

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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: [email protected]

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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

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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

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