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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

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

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Baby Blue Sound Collective

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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.

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

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Baby Blue Sound Collective

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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)

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Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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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

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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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

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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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

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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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

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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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

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

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MeWe
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Website