The CHC Podcast

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

Hosted on Acast. See acast.com/privacy for more information.

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

Hosted on Acast. See acast.com/privacy for more information.

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

Hosted on Acast. See acast.com/privacy for more information.

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.

Hosted on Acast. See acast.com/privacy for more information.

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

Hosted on Acast. See acast.com/privacy for more information.

Today’s Town Hall Meeting deals with cardiac transplantation. The first heart transplant was done in South Africa in December of 1967 by Dr. Christiaan Barnard, with pediatric heart transplants following close behind. Through the years, the operation itself, donor and recipient matching procedures, and post-transplant management have evolved to what it is today. Heart transplantation is becoming more common in the CHD community as CHDers are living longer and running out of palliative surgical options. Research is being done to develop new surgeries and protocols to increase quality and quantity of life for CHDers, but in the meantime, transplant can be a great option for those who are candidates. 

Guy Simkay was born in Israel with dextro-transposition of the great vessels with double outlet right ventricle and a ventricular septal defect. He received his heart transplant at the age of 46 at The Mayo Clinic in Rochester, MN, but is hoping to move back to the New York City area soon.

Lorrie is a 26-year-old born with a complex single ventricle composed of right dominant complete AV canal and Double Outlet Right Ventricle. She had three palliative heart surgeries as she grew up providing her moderate relief. During her time in college, her single ventricle heart could not keep up. Since she was out of surgical options, she was listed for transplant in 2020 and received the gift of life over a year later. She is now using her new quality of life to become a Physician Assistant to give back to the CHD and transplant communities.

Jessica Carmel was born with hypoplastic left heart syndrome. She lived with a Fontan heart for years before needing a heart transplant. After her transplant, she still felt unwell and for over two years she lived with a lot of pain, migraines, and was unable to eat much of anything without getting sick. Jessica and her mother did a lot of research and believed that perhaps her gallbladder wasn’t working well. After a Herculean amount of advocacy work, her gallbladder was removed, and she got relief from the radiating pain she suffered from and her migraines, but her medical journey wasn’t over. Her kidneys started to shut down, and she needed a kidney transplant. Jessica has written about her medical odyssey in her book The Hearts of a Girl. Her sister Amy ended up donating the kidney she so desperately needed.

Co-hosts Jason Crutchley and Leslie Castro, both transplant recipients themselves, interview these three guests in the first segment. The second segment allows Patrons an opportunity to ask the guests questions and share their own stories.

The final segment allows the Co-Producers, Ayrton Beatty, and Anna Jaworski, an opportunity to share their feelings about the podcast.

Through many conversations during this podcast, we learn so much about cardiac transplantation in the CHD community. The discussion includes a historical perspective, certain medications and their potential side effects, and how these heart warriors have dealt with the journey to get, and keep, a new heart.

We hope you'll join this episode and continue the conversation with us on Facebook, Instagram and TikTok.

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

Hosted on Acast. See acast.com/privacy for more information.

How does having a congenital heart defect complicate developing long-term, sustainable relationships? Are there specific steps we can take to develop the kind of committed relationship that is sure to last? What measures can be taken to help us become the best partners we can for our loved ones?

This Town Hall Meeting deals with different aspects of being in relationships and being a part of the CHD community. These aspects range from being in a long-term, committed relationship, to being single and what challenges being a CHDer can find when looking for love.

We have a panel of Guests: Annie Ulchak, a Fontan survivor, has been married and divorced and is now in a committed relationship. Annie will share about some of the challenges of having a chronic illness while trying to create a sustainable relationship.

Brian Ramsay is a single ventricle patient. He has been married for three years to his wife, Tilly, whom he knew for four years prior to their marriage. Brian shares about the unique circumstances of having a congenital heart defect and being married to someone who also has health concerns.

Ayrton Beatty has drug-induced Long Q-T Syndrome and is bereaved of Edward, a brother who died of an undiagnosed CHD. Ayrton is non-binary and talks about some of the unique challenges of having an invisible condition and how people are often not as understanding or compassionate as they need to be in order for a relationship to blossom and grow.

Our Hosts for this program is a mother-daughter team. Anna Jaworski is also the Executive Producer of the podcast. She is Hope Jaworski's mother. Hope was born with a single ventricle heart and has a Fontan procedure and a Fontan revision plus a Maze procedure. Hope and Alla also share their own relationship considerations and struggles.

Finally, we have our Producer for this episode. Nicholle Bilodeau discovered she had a congenital heart condition in her 40s. This condition has complicated her decision to date and develop relationships. Having had open-heart surgery less than a year ago, Nicholle Bilodeau has a different perspective on living with a congenital heart defect.

Through many conversations in this episode, we gain advice from people of all ages. We also hear some lessons learned and glean some wisdom from those who have been there, in both short-term and sustained relationships.

We hope you'll join this episode and continue the conversation with us on FB and IG.

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

Hosted on Acast. See acast.com/privacy for more information.

Today’s Town Hall Meeting deals with Mental Health. This is a hot topic in the news right now. It seems as though, especially since the pandemic, more people are aware of what isolation, trauma, and illness can do to a person’s mental health.

Those of us living with congenital heart defects are all too aware of how we can feel isolated, how our physical health has been compromised at different times in our lives, and anyone who has undergone open-heart surgery has suffered from medical trauma.

In this episode, we have three Guests, 2 co-hosts, Annie Ulchak and Ayrton, and the producer is Anna Jaworski.

Richard Schwindt is a therapist, a social worker, and the author of Emotional Recovery from Congenital Heart Disease and 25 other books. He is also a father and a grandfather. He and his grandson have both had multiple procedures for their congenital heart defects. Richard’s career in mental health has spanned over four decades and he enjoys helping patients, especially congenital heart patients, manage their anxiety and live life to the fullest.

Jennifer Angelone is a tetralogy of Fallot (or TOF) patient, licensed mental health clinician, and an advocate with Young Mended Hearts. Jennifer works with ECHO Dance Collaborative.

Melissa Kottelenberg is a Certified Holistic Health Coach who helps women take control of their health and wellness by helping them prioritize nutrition, exercise, healthy lifestyle habits, and natural solutions so they can live focused and energized lives. She’s also a mom of five and ‘heart mom’ to 14-year-old Tyson, who was born with severe congenital heart defects which required three open-heart surgeries by the time he turned 2 years old.

The 2nd segment included Patrons of the podcast who interacted with the co-hosts and the guests.

In the 3rd segment, producer, Anna Jaworski, also joined the conversation.

Jennifer's Social Media Information:

Intagram: @doublenjenn16

TikTok: @doublenjenn16

Richard's Social Media and Book Information:

@rgschwindt (Twitter)

Richard Schwindt (LinkedIn)

All books on Amazon

Melissa's Social Media Information:

Website: http://www.essentiallivingwithmelissa.com

IG: https://www.instagram.com/essential_living_with_melissa

FB: https://www.facebook.com/essentiallivingwithmelissa

LinkedIn: https://www.linkedin.com/in/melissakottelenberg

Hosted on Acast. See acast.com/privacy for more information.

What does it take to be a father in the CHD (Congenital Heart Defect) community? We sat down with three amazing dads—Chris Harris, Dylan Henricks, and Michael McKelvey—to find out. Each of these men has a unique story to tell about parenting a child with CHD. Chris is the father of a baby born with a double outlet right ventricle, while Dylan is both a father and a person born with CHD himself. Michael, also born with CHD, recently became a dad to a heart-healthy child and brings a different perspective to the table.

During our candid conversation, these fathers opened up about everything from their fears and concerns during pregnancy to the joy of welcoming a healthy child. We explored the role technology and social media play in providing support and boosting confidence as parents navigate this complex journey. We also spoke about the power of financial assistance and the challenge of managing the costs associated with CHD. But perhaps most importantly, our guests shared their stories of resilience, strength, and the unique challenges they face as fathers in the CHD community.

As we wrapped up our conversation, we talked about the importance of challenging negative stereotypes about dads in the CHD community. It's a testament to the incredible dedication and hard work of all parents—both mothers and fathers—in this community. Join us to hear these inspiring stories and discover what fatherhood really means in the CHD community.

Helpful Links:

The Heart of a Father -- the book Anna mentioned in the show --

https://www.babyheartspress.com

Many thanks to Myles Schweitzer -- the Wild Mooseman Band for our music. We love you, Myles!

To support our show, please join our Patreon team:

https://www.patreon.com/HearttoHeart

Hosted on Acast. See acast.com/privacy for more information.

In this fifth episode of "The CHC Podcast," Co-Hosts, Joe Flowers and Anna Jaworski, talk to Heart Mom, Anita Moreno Marcelo, and Heart Warrior, Misty O'Leary, about being single parents while living with congenital heart defects. Anita shares what it was like for her to be separated and then divorced, raising two sons, and the symbiotic relationship she had with her mother as both caretaker and recipient of care.

Misty O'Leary talks with Anna about being raised as a Heart Warrior, her surgeries, and her pregnancies. She also shares with Anna what it's like to raise her daughter alone and how she is also her mother's caretaker.

In the last segment, Anna and Joe talk about what they've learned and how they felt about the episode.

Helpful Links:

The Heart of a Mother -- the book Anita wrote an essay for

https://www.babyheartspress.com

Many thanks to Myles Schweitzer -- the Wild Mooseman Band for our music. We love you, Myles!

To support our show, please join our Patreon team:

https://www.patreon.com/HearttoHeart

Hosted on Acast. See acast.com/privacy for more information.