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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/736588Thanks 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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Anna's Buzzsprout Affiliate Link
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/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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Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
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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]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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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/11968012Thanks 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 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-groupThanks 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 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.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 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/CHCPodcastAppleThanks 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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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/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 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.comThanks 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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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)
Become a podcast subscriber: https://www.buzzsprout.com/62761/supportThanks 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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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/supportThanks 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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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/supportThanks 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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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/supportThanks 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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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/supportThanks 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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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/supportThanks 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 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/supportThanks 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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Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
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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/supportWe appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!
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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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/supportThanks 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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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/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:
Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
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