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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!
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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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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!
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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!
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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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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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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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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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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!
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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!
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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
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Witnessing your child's bravery and resilience as they navigate a life-altering condition like hypoplastic left heart syndrome (HLHS) is both harrowing and inspiring. Hollie Stephenson joins Anna to share the profound story of her son Tom, who not only fought through the early challenges of HLHS but also the complex battle with protein-losing enteropathy (PLE) in his later years. Her vivid accounts from Tom's diagnosis in utero, through his surgeries, and onto his impressive transition into adulthood, working in politics, is nothing short of remarkable. Their journey underscores the unpredictable nature of congenital heart defects and the critical importance of vigilant medical care.
Through Tom's story, we uncover the myriad of long-term treatments and daily hurdles that come with managing PLE. We discuss the innovative treatments at the Children's Hospital of Philadelphia (CHOP) that led to significant improvements in his health and share insights from another patient's experience where a medication for Crohn's disease offered unexpected relief. These narratives illuminate the evolving field of pediatric cardiology and the crucial balance of medication management, driving home the message that children with heart conditions can and should lead full, joyous lives.
Parenting is an art—especially so when your child has a heart condition. Our conversation traverses the delicate art of letting go, allowing our children to taste independence and embrace life's experiences, from participating in sports to taking on careers. We explore the shift from advocacy to supporting our children's autonomy, the complexities of medication management into adulthood, and the emotional journey that comes with each milestone. Hollie and Anna share their personal challenges and triumphs, offering a heartfelt insight into what it means to parent through uncertainty with hope and courage. Join us for an episode that's not just about the struggles, but also the extraordinary victories that come with raising a child with a heart condition.Support the show
Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
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When your child's heartbeat is a symphony laced with irregularities, every moment becomes a measure of uncertainty. This is the world heart moms like myself, Anna Jaworski, and my guest Kelsi Rogers live in every day. Join us as we peel back the curtain on the mental marathon of raising children with congenital heart defects (CHD). Our raw conversation plunges into the depths of hypervigilance, the delicate nature of our children's health, and the language that both describes and defines their conditions. Sharing from our hearts, we expose the often-unspoken mental toll of the constant fear and the struggle to find a semblance of normality while fiercely protecting our children's lives.
The battle doesn't end with personal struggles; the war against CHD is fought on the frontlines of research and advocacy as well. In this heartfelt exchange, Kelsey and I explore the gap in CHD research funding and the misleading statistics that mask the true prevalence of these heart conditions. We dissect the critical need for comprehensive newborn cardiac screening to catch these silent afflictions early, recounting stories that underscore the urgency and importance of this cause. Our plea for increased education and advocacy rings clear, with a hope to catalyze change in how CHD research and screening practices are approached and executed.
Concluding on a note of hope, we cast a light on initiatives forging paths towards groundbreaking treatments, including the exciting prospects of in-utero solutions and the creation of privacy-preserving registries for targeted research through HeartWorks. By sharing personal anecdotes, we underscore the severity of electrical heart issues and rally for greater support and recognition. It's not just a podcast; it's a community coming together every Tuesday at noon Eastern time, sharing a commitment to empower and support the CHD community. Your participation breathes life into our mission, reinforcing the collective heartbeat of families touched by congenital heart disease.
Links mentioned in this podcast:
HeartFelt: https://www.facebook.com/heartfeltscreening
Tiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrot
HeartWorks: https://www.hlhsconsortium.org/heartworks/
Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/newSupport the show
Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
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This episode of "Heart to Heart with Anna" features a very special heart mom. Kelsi Rogers talks about the surprising circumstances around her son's heart condition. Born with an electrical problem in his heart, Jett has already faced life-and-death situations several times in his short life. Not even three years old yet, he has undergone an ablation and an open-heart surgery.
Tune in to find out what kind of heart defect Jett has, why the ablation was so extensive, and what kind of surgery eventually saved his life.
Following the interview with Kelsi Rogers, co-editors Megan Tones and Anna Jaworski read the last half of Chapter Seven: Facing My Mortality from their new book The Heart of a Heart Warrior Volume Two: Endurance.
Links mentioned in this podcast:
HeartFelt: https://www.facebook.com/heartfeltscreening
Tiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrot
Baby Hearts Press: https://www.babyheartspress.com (for more information on the book The Heart of a Heart Warrior and more!)
To sign up for a Baby Hearts Press Book Study, visit our website here: https://www.babyheartspress.com/volume-2Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/new
Support the show
Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
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As an author myself, I understand the power of stories to heal and inspire. That's why I'm thrilled to introduce Deanna Altomara, who created "Chrysalis," a book to help people facing open-heart surgery. Born with a congenital heart defect herself, Deanna understands what it means to have had open-heart surgery. Deanna's tale is a testament to how health education and storytelling can intertwine to provide solace and strength to those facing similar battles.
Navigating the complex maze of medical procedures and developmental disabilities can be daunting for teens and their families, but this episode illuminates a path of understanding. It was essential for Deanna to create a book for her cousin, who was born with a heart defect and who also deals with developmental disabilities. We delve into the meticulous creation of age-appropriate resources that educate and resonate, merging factual information with fun. Discover how collaboration with an illustrator brought forth a book that captivates without patronizing, and how such tailored storytelling can touch the hearts of its readers and bridge significant gaps in resources.
Rounding out our heartfelt talk, we share insights into the creation of indispensable tools that guide parents through the intricacies of surgeries and special needs.
In the third segment of the podcast, you'll hear my co-editor Megan Tones and me, as we continue reading from The Heart of a Heart Warrior Volume Two Endurance. This week, we cover the first half of Chapter 7 which includes David Franco's harrowing recovery journey which underscores the essence of resilience. This chapter is entitled "Facing My Mortality" and you'll hear essays by Becca Atherton as she confronts life's fragility and her impending mortality. We also hear from Margaret Raymond as she describes how her mental health has been challenged over time due to living with her congenital heart defects. Despite the inevitable, we find a collective strength in this chapter.
Join our supportive community, where every Tuesday, we offer a dose of inspiration and the comforting reminder that no one walks this path alone.
You can find Deanna on @d.scribing.stories on Instagram and https://deannaaltomara.comTo sign up for a Baby Hearts Press Book Study, visit our website here: https://www.babyheartspress.com/volume-2
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Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
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