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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

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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

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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

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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.

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We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

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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/

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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/

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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.

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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/new

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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-2

Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/new

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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.com

To 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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