The CHC Podcast: CHD Conversations

In this episode of The CHC Podcast, hosts Anna Jaworski and Ayrton Beatty discuss the emotional and life-changing impacts heart transplants have on the siblings of heart warriors. Joined by a special panel of guests, Roy Simkhay, Michelle Steltzer, Stephen Guerin, and Amy Cowin, they explore personal stories, challenges, and the deep connections forged through the shared experiences of managing congenital heart defects and transplants. Produced by Annie Ulchak and Guy Simkhay, the episode delves into the complexities of supporting a sibling through life-threatening health issues and the unique journey of resilience and hope.

Featured Guests include: Amy Cowin, Stephen Guerin, Roy Simkhay, and Michelle Steltzer.

Co-Hosts for this episode are: Anna Jaworski and Ayrton Beatty.

Co-Producers for this episode are: Annie Ulchak and Guy Simkhay

Volunteer/Patron: Frank Jaworski

If you enjoyed this episode and would like to support the program, please join our Supporter's Club: https://www.spreaker.com/podcast/the-chc-podcast--5779157/support

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Parents of children with congenital heart defects may worry that their afflicted child's siblings will have a rough go of things considering the hospitalizations, doctor's appointments, therapy treatments, and more. They may worry that siblings will resent the extra time they need to spend with their medically fragile children.

This episode features four adults who grew up with a brother or a sister who was born with a congenital heart defect. Tune in to hear what struggles they faced, how their families handled having frequent doctors' appointments, and surgical procedures, and why a tight family unit is so critical for helping children develop compassion, empathy, and a deep love for their siblings.

Featured Guests include: Amy Cowin, Stephen Guerin, Roy Simkhay, and Michelle Steltzer.

Co-Hosts for this episode are: Anna Jaworski and Ayrton Beatty.

Co-Producers for this episode are: Annie Ulchak and Guy Simkhay

Volunteer/Patron: Frank Jaworski

If you enjoyed this episode and would like to support the program, please join our Supporter's Club: https://www.spreaker.com/podcast/the-chc-podcast--5779157/support

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Ever wondered how congenital heart disease (CHD) and heart rhythm disorders intertwine? Join us for a compelling episode where Dr. Samuel Asivatham (Dr. Sam) from the Mayo Clinic, volunteer Ayrton Beatty, and CRNA Frank Jaworski share their invaluable insights. Dr. Asivatham takes us through the latest in managing fast and slow heart rhythms, including cutting-edge procedures like ablation and defibrillator placement. Ayrton gives a heartfelt account of living with drug-induced long QT syndrome, while Frank provides a detailed overview from the electrophysiology lab.

Navigate the complex landscape of treating heart rhythm issues in CHD patients. We discuss personalized diagnostic and treatment approaches, leveraging innovative tools such as 3-D printed hearts and virtual reality. Ayrton’s narrative highlights the emotional and practical challenges of managing long QT syndrome daily, offering a raw look into the realities faced by patients. We also explore the role of smartwatches in monitoring physical activities and touch on the interplay of rhythm disorders with other health conditions like osteoarthritis.

Finally, stay ahead of the curve with advancements in congenital heart care and genetic heart arrhythmias. Dr. Sam discusses the exciting potential of gene therapy, while Frank shares specialized knowledge on anesthesia for patients with rhythm issues. Learn about the lifelong journey of CHD patients, from infancy to adulthood, and the evolving spectrum of heart rhythm challenges they face. Engage with us on social media and support our mission through Hearts Unite the Globe as we continue to provide crucial information and advocacy for the CHD community.

If you enjoyed this episode and would like to support the program, please join our Supporter's Club: https://www.spreaker.com/podcast/the-chc-podcast--5779157/support

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Imagine handing over your two-day-old infant for surgery, not knowing what the future holds. Join us in this poignant episode of The CHC Podcast as we share the incredible journeys of Regina Lawrence, Anna Jaworski, and Hava Simkhay, three mothers whose lives were forever changed by their children's congenital heart defects. They recount their experiences of navigating multiple surgeries, the anguish of delayed diagnoses, and the resilience needed to support their children through critical medical interventions.

Hava opens up about the emotional rollercoaster of her son's heart condition, from early diagnoses to a life-saving heart transplant. Her story highlights the indispensable role of medical professionals and the vital support from an online community of transplant patients and families. Discover how shared experiences and encouragement from others who have faced similar battles provided Hava with the strength to persevere during her son's recovery.

Advocacy and love shine brightly in this episode, with insights from Anna, Frank, and Regina on the importance of seeking second opinions and building strong relationships with medical providers. Hear how parental determination and the unwavering support of anesthesia providers have a profound impact on patient care. Stay tuned as we preview next month's topic, World Heart Rhythm Week, and invite you to continue the conversation on social media.

If you enjoyed this episode and would like to support the program, please join our Supporter's Club: https://www.spreaker.com/podcast/the-chc-podcast--5779157/support

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Imagine the strength it takes to face a heart transplant, the resilience needed to advocate for a life-saving surgery amidst the daunting challenges of a global pandemic, and the triumph of embracing a second chance at life. Our latest panel discussion brings forth a mosaic of these extraordinary journeys within the congenital heart disease community. Peg Eitl shares Joe's story, a young man with Down syndrome, as she takes us through Joe's incredible fight for a dual heart and liver transplant. At the tender age of 11, Cora Guerin underwent a heart transplant that reshaped her existence. Piper Davis also shared about the surgeries she underwent before a transplant became her only option.

The emotional landscape of a transplant recipient extends far beyond the operating room, intertwining with the silent battles of mental health and the delicate dance of caregiver well-being. In our heartfelt discussion, we peel back the curtain on the intimate moments of support from nurses, the inner turmoil of survivor's guilt, and the critical role of professional psychological support. Our conversation also spotlights the caregivers' journey, an often underrepresented narrative, as we explore the strategies for managing the immense responsibilities that accompany caring for a transplant patient. From college students juggling academic pressures to caregivers fostering their own networks of support, we emphasize the necessity of community and self-care for all involved.

Wrapping up our conversation, we reflect on the diverse narratives shared by transplant recipients and their caregivers. The candid discussions unearth the realities of accepting 'high-risk' organs and the personal triumphs following transplantation. Our exchange underscores the pivotal necessity of early, transparent conversations about the transplant process, the personalized nature of each journey, and the support systems that are the lifeline for those navigating this profound path. Join us as we continue to elevate these critical stories, fostering deeper understanding and connection within the CHD community.

If you enjoyed this episode and would like to support the program, please join our Supporter's Club: https://www.spreaker.com/podcast/the-chc-podcast--5779157/support

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

What is PHACE Syndrome? Why is it important to the congenital heart defect community?

Tune in to this episode featuring Alexis Sinclair as she shares with The CHC Podcast team her experiences with her child who was born with PHACE syndrome. While the most obvious component of PHACE syndrome are red splotches on the skin called hemangiomas, the second most prevalent condition is a cardiac condition, usually coarctation of the aorta. Fully 41-67% of children with PHACE syndrome are plagued by congenital heart defects, and in the case of Alexis' daughter, this is the most concerning element of her rare disease.

PHACE Syndrome affects one in a million people that we know of. This syndrome was only fairly recently put into the medical journals. Over the last two decades, more treatments have become available and awareness is of paramount importance in getting help for those suffering from PHACE syndrome. 

Join our Hosts, Ayrton Beatty and Annie Ulchak as they interview Alexis Sinclair. In the second segment of the episode, you'll have a chance to hear from Volunteers and Patrons (if you'd like to join in future episodes, see the links below to become a Patron), and in the 3rd segment, Producers Anna Jaworski and Nicholle Bilodeau share their thoughts on the episode as well.

For more information, this link may be helpful:

PHACE Syndrome Community: https://www.phacesyndromecommunity.org/

If you enjoyed this episode and would like to support the program, please join our Supporter's Club: https://www.spreaker.com/podcast/the-chc-podcast--5779157/support

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Have you ever wondered how the strength of the human spirit can triumph over medical challenges? Our latest episode offers a profound insight into the lives of those who've navigated the complexities of congenital heart defects (CHD) from infancy to adulthood. Our heart-felt panel, including Michelle De Roe, Paula Miller, and Diane Pucci, alongside hosts Nicholle Bilodeau, and Ayrton Beatty, share their personal narratives that will leave you inspired by their resilience and determination. The last segment includes insights from producer and heart mom Anna Jaworski.
Embark on a journey through the evolving landscape of medical treatments and patient advice that has shaped the CHD community over the years. Our guests open up about the intricacies of their conditions, from truncus arteriosus to tetralogy of Fallot, and the unexpected ways these heart defects have influenced their career paths and personal growth. The courage to pursue dreams, the joy in advocating for others, and the unexpected twists along the way - these stories are not just about survival, but about thriving despite the odds.
This episode is more than just an exchange of experiences; it's a celebration of the indomitable spirit found within the heart survivor community. We touch on the power of parenting, the importance of self-advocacy, and the incredible progress in medical understanding. This episode is a testament to the shared bravery among patients, parents, and the medical teams who stand with them in the ongoing battle against CHD. Tune in to feel the heartbeat of a community united by challenges but defined by hope and perseverance.

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

As a heart mom and co-host of this transformative podcast, I'm Anna Jaworski, joined by Annie Ulchak, a resilient CHD patient, and together we're thrilled to bring you an episode brimming with hope and scientific breakthroughs. We welcome the brilliant Dr. Timothy Nelson from the Mayo Clinic, and survivors like Brenton Ball and Jennifer Gutman, who open up about the revolutionary stem cell therapies that are redefining what it means to live with congenital heart defects. Their stories are not just about survival; they're a testament to the power of pioneering treatments and a future that looks beyond heart transplants.

Throughout our discussions, we unravel the complexities of stem cell research and its profound implications for cardiac care. Marvel at Lucas's journey, a child whose life was dramatically altered by a stem cell trial, and learn about how this science is challenging the boundaries of traditional heart treatments. We dissect the nuances of various stem cell sources, the importance of genetic imaging, and the potential that bio repositories hold. Each story shared, each advancement highlighted, echoes our collective pursuit for solutions that aim to preserve the patient's native heart.

This episode isn't simply a compilation of medical marvels; it's a deep dive into the human experiences behind the diagnoses. We tackle the emotional terrain of CHD research, examining its intersection with mental health, and celebrate the incredible strides from the first heart transplant to the tantalizing possibility of in-utero interventions. Join us as we honor the resilience of families, the dedication of researchers, and the innovative spirit that fuels our continuous quest–all while offering solace and strength to those navigating the heart journey.

Other Related Podcast Episodes

The Use of Stem Cells in Treatment for Hypoplastic Left Heart Syndrome (HLHS) https://www.buzzsprout.com/62761/9949984

Advancements in Stem Cell Therapies and for HLHS Heart Warriors https://www.buzzsprout.com/62761/494353

HeartWorks Update 2023 https://www.buzzsprout.com/62761/12191542

Stem Cells for HLHS Heart https://www.buzzsprout.com/62761/458172

Adult Stem Cell Success Story! https://www.buzzsprout.com/62761/10633117

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

When the twinkling lights of the holiday season blend with the concern of congenital heart conditions, families like ours craft a celebration that's both safe and full of joy. ICo-hosts Aryton Beatty and Annie Ulchak, along with guests Chris Atherton, Leslie Castro, and John Ritchens Jr., share their heartfelt strategies for managing the festive season in the shadow of CHDs. Learn how heart mom, Chris, turns her backyard into a winter wonderland, while Leslie, a heart transplant recipient, navigates family gatherings with care to dietary needs, and John, a healthcare professional and heart warrior himself, helps us understand the role of shared responsibility in keeping the holiday spirit alive.

Holidays with congenital heart disease don't just come with wrapped presents; they bring a package of adjustments and poignant reflections. Tune in as we uncover the silver linings within our families' "goodwill extravaganza," a touching new tradition born from the heart's resilience. Our panelists add color to this tapestry with their own celebrations; from the joy of postponed festivities that ensure everyone's included to the poignant incorporation of loved ones' memories, we highlight that the essence of the season goes beyond the conventional calendar and into the realm of cherished communal support.

The finale of our season brings us to the intimate corners of hospital wards during the holidays and the extraordinary ways families find to imbue these moments with joy. We share stories of hope and adaptation, from the warmth of virtual connections to the postponed holiday feasts waiting for the right moment. Co-Producers, Guy Simhkay and Anna Jaworski, who've both navigated life with CHD, lend their voices to celebrate the triumphs over hardships, the creation of new traditions, and the power of community. Join us as we embrace the season, not just through the festivities we know and love, but through the deeper connections that define what it means to be family.

Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.

As we journey through the complexities of life with a Congenital Heart Defect (CHD), our guests - Anna Marie Taylor, Nicholle Bilodeau, and Djinni Yancy - offer personal insights and shared experiences. Their powerful stories, filled with struggles and triumphs, underscore the significance of gratitude, resilience, and unwavering support from loved ones. Together, we unpack the latest advancements in medical treatments and affirm the integral role mindfulness plays in navigating the challenges posed by CHD.

Being your own advocate when it comes to managing your medical conditions is crucial. That's the message Djinni, Anna Marie, and Nicholle passionately communicate in this episode. They drive home the need for proactive patient advocacy and the transformative impact of education in understanding medical conditions. Their firsthand experiences create a platform for open dialogue with our audience, fostering a supportive community for everyone affected by CHD.

Finally, we delve into the intricate landscape of familial experiences with congenital heart defects. Shedding light on the emotional toll of living with a heart condition, we discuss the importance of monitoring and awareness. From the perspective of a heart mom and two adults with CHD, we delve into the profound benefits of mindfulness in managing anxiety. We wrap up by exploring the lived experiences of CHD patients, their unique challenges, and the importance of fostering gratitude and resilience. Thanks for joining us on this heart-to-heart episode, and continue the conversation with us on our social media platforms.

If you'd like to be a Patron or join our group of volunteers, check out our website: https://www.heartsunitetheglobe.com

Become a supporter of this podcast: https://www.spreaker.com/podcast/the-chc-podcast-chd-conversations--5779157/support.