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Unlock the future of heart care and understand how a revolutionary cooperative platform is reshaping the landscape of congenital heart disease treatment. Join us as we explore the groundbreaking innovations at HeartWorks, a transformative program at the Mayo Clinic led by Dr. Tim Nelson. With heartfelt insights from Erin Borkowski, a dedicated heart mom, and Rachael Gott, an inspiring adult living with congenital heart disease, we delve into the challenges and advancements that are redefining patient care and clinical trial processes.

Meet the pioneers behind the scenes as Dr. Nelson explains how HeartWorks is bridging the gap between research and real-world applications. By harnessing patient-contributed data, this initiative is overcoming the frustrations of traditional clinical trials, making them more effective and timely. Rachael Gott shares her personal journey with HeartWorks, emphasizing the significant impact of ongoing research and patient empowerment in the fight against congenital heart disease.

Discover how HeartWorks is turning obstacles into opportunities through a data-driven cooperative platform. This patient-owned model is not only increasing enrollment in clinical trials, but also creating a collaborative network of institutions across the nation. From engineering heart muscle cells from skin biopsies to making clinical trials more accessible, HeartWorks is revolutionizing the way we think about congenital heart disease care. Tune in to learn how you can support these efforts and contribute to a brighter future for individuals of all ages affected by congenital heart conditions.

Rachael’s episode: Navigating Life with HLHS and Marfan Syndrome: Rachael’s Powerful Story: https://tinyurl.com/393hbmrm

Dr. Tim Nelson’s other “Heart to Heart with Anna” appearances:

Advancements in Stem Cell Therapies and Research for HLHS Heart Warriors: https://hearttoheartwithanna.buzzsprout.com/62761/episodes/494353-advancements-in-stem-cell-therapies-and-research-for-hlhs-heart-warriors

The Use of Stem Cells in Treatment for Hypoplastic Left Heart Syndrome (HLHS): 

https://hearttoheartwithanna.buzzsprout.com/62761/episodes/9949984-the-use-of-stem-cells-in-treatment-for-hypoplastic-left-heart-syndrome-hlhs

HeartWorks Update 2023: https://hearttoheartwithanna.buzzsprout.com/62761/episodes/12191542-heartworks-update-2023

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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Ever thought you could lead an exhilarating life despite a congenital heart defect? Meet Ben Johnson, a formidable heart warrior born with tetralogy of Fallot. Tune in as Ben, now 45, recounts his spirited childhood and how his heart condition didn't stop him from being a vibrant, active child. From hospital memories to a loving family and supportive teachers, Ben's story is a testament to resilience and the power of a strong support system. He takes us through his childhood escapades, proving that with the right mindset and community, a heart defect doesn't have to define your limits.

Our conversation with Ben reveals the intricate journey of living with congenital heart defects, focusing on the visible reminders, including his scars and tattoos, and their role in shaping his life narrative. Delve into Ben's fitness journey where he embraces an active lifestyle with weightlifting, debunking common myths about limitations for heart patients. With the guidance of a personal trainer and self-monitoring, Ben exemplifies how managing health proactively can lead to a robust and fulfilling life, inspiring others with heart conditions to pursue their ambitions confidently.

The episode doesn't just stop at physical well-being. We explore the significant link between exercise and mental health, sharing personal triumphs over post-surgical discomfort and the incredible benefits of targeted workouts. From stretching and strengthening exercises to the profound impact of endorphins, discover how maintaining an active routine can elevate mood and reduce anxiety. Encouraging inclusivity in physical activities, we stress that everyone, irrespective of physical limitations, can find joy and freedom in movement. Join us in fostering a community of heart warriors, advocating for empowerment, and cherishing each milestone along our shared journeys.

Ben Johnson's contact information: https://tinyurl.com/y9yw53nj

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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Website

Send us a text

Do Halloween festivities bring more joy or concern when you’re living with a congenital heart defect? Ashley DeMarco shares her journey growing up with complex heart conditions, turning personal challenges into stories of resilience. Alongside her, we hear from Michael Liben, who navigates grief with humor on his podcast "Bereaved but Still Me," and Rita, who provides a multi-generational perspective on congenital heart disease (CHD) with her family's experiences. Together, we unravel the nuances of navigating health and community as young adults and parents in the CHD world, painting a picture of hope and solidarity.

As we transition into the spirit of Halloween, nostalgia and safety tips blend together in our lively discussions. We reminisce about trick-or-treating in tight-knit communities, while also highlighting the essential precautions for children with heart conditions during these festivities. The contrast between past and present perceptions of safety reveals a world that’s both cautious and filled with connection through shared medical experiences. Our conversation is a heartwarming reminder of the bonds formed between parents and children, especially when magic and medicine intersect.

Finally, we address the often-overlooked emotional toll of compassion fatigue. With stories from heart camps and non-CHD friendships, we explore the challenges of maintaining relationships while living with ongoing health issues. Rita reflects on a memorable live show, demonstrating how our means of connecting have evolved. The conversation serves as a beacon for understanding and connection, underscoring the profound need for community support. We invite listeners to contribute their insights and stories, enriching the dialogue and reinforcing the shared journey of the CHD community.

Helpful Links:

The Rita, Victoria and Heidi Scoggins' episode: https://tinyurl.com/3Scoggins

Amy Erhart's first Heart to Heart with Anna episode: https://www.buzzsprout.com/62761/episodes/15810923

One of Michael Liben's Heart to Heart with Anna episodes: https://www.buzzsprout.com/62761/episodes/736588

Compassion Fatigue Episode: https://www.buzzsprout.com/62761/episodes/736588

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

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Facebook
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MeWe
Twitter
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Website

Send us a text

Meet Marina Lohri, a true trailblazer in the world of congenital heart defects (CHDs). Born with tricuspid atresia, a ventricular septal defect, and an atrial septal defect, Marina’s journey from a life-saving C-section to being among the first in Switzerland to undergo a modified-Fontan procedure at just 11 months old is nothing short of miraculous. In our conversation, Marina unfolds her inspiring story and shares her passion for working at atHeart Medical, where she is dedicated to promoting innovative solutions for those with similar heart conditions.

Navigating the complexities of living with Atrial Fibrillation (AFib) and congenital heart defects is no small feat. Marina opens up about her personal experiences with rapid heart rates and the profound decision to undergo an ablation. As she contemplates the intricate considerations surrounding pregnancy with a congenital heart condition, we delve into the evolving medical advice she received and the diverse perspectives of healthcare professionals. Marina’s story is a testament to the importance of specialized care and the expertise found at top hospitals in Switzerland.

From finance to the medical field, Marina's career journey is a testament to aligning work with personal values and health needs. As she shares her transition to atHeart Medical, a startup focused on congenital heart defects, Marina highlights the rewards of working in a supportive environment that truly understands the challenges of living with CHD. Her advocacy extends beyond her professional life, as she continues to inspire others with similar heart conditions to pursue their passions and find purpose in their careers. Marina’s resilience shines through as she navigates life's challenges with a positive attitude and a commitment to the CHD community.

Helpful Links:

atHeart Medical website: https://atheartmedical.com

Support Organizations:

Mended Hearts: https://mendedhearts.org

(In German)
Herznetz: https://www.herznetz.ch/
Fontanherzen: https://fontanherzen.ch/
Swiss Heart: https://swissheart.ch/

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Send us a text

Unlock the latest in cardiac neurodevelopmental research with Dr. Dawn Ilardi, a distinguished clinical neuropsychologist, as we navigate the complexities of how congenital heart defects (CHDs) impact children's neurodevelopment. Discover the groundbreaking strides made by the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), a global network of over 50 institutions revolutionizing clinical care and research. Explore cutting-edge advancements in brain imaging and gain insight into the often-overlooked influences of non-cardiac factors, such as the placenta, along with the indispensable role of family involvement in enhancing developmental outcomes.

Hear a poignant story of parental vigilance that underscores the vital need for early detection and standardized imaging in pediatric cardiology. Despite the challenges faced by families with limited resources, new initiatives are bridging the gap between hospital-based care and private practice, providing essential support and education. Cultural perceptions of disabilities are also on the table, emphasizing the importance of culturally sensitive approaches tailored to diverse communities, ensuring all families receive the understanding and assistance they deserve.

Finally, we shed light on the crucial connection between parental mental health and a child's developmental journey. Understand the nuances of capturing accurate baselines in neurodevelopmental assessments for children with CHD and why repeat evaluations are essential. As we discuss the emotional rollercoaster faced by parents, we stress the value of community resources and social media groups in offering support. Join us to appreciate the profound impact of parental well-being on a child's health trajectory and learn strategies for balancing the demands of caregiving with the necessity of self-care.

Dr. Ilardi's previous "Heart to Heart with Anna" appearance: https://tinyurl.com/DawnIlardi2014

Dr. Ilardi's website: https://www.pedneurocenter.com

Dr. Ilardi's email: [email protected]

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
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MeWe
Twitter
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Website

Send us a text

How do families navigate the uncharted waters of raising children with congenital heart disease (CHD)? Join us on a groundbreaking episode of Heart to Heart with Anna, where we host our very first live show with a studio audience! With guests like Amanda, Joey, Michael, Ayrton, Regina, Rachel, and Chris, you'll hear raw and honest conversations about everything from recent surgeries to the complexities of living with DiGeorge syndrome and HLHS. The live audience format brings an unscripted, spontaneous energy that's sure to engage and inspire.

Ever wondered what it takes to grow a podcast network dedicated to CHD? We share our ambitious plans for the next five years, including launching podcasts in multiple languages such as Spanish, Urdu, and even an African language. You’ll laugh along with us as we recount some of the humorous mishaps we've encountered—like losing an internet connection during a live show from a coffee shop! Our journey is a testament to the passion and community effort behind each episode, evolving from personal contacts to listener-generated suggestions.

This episode also offers a deep dive into the emotional landscape of CHD families. Special guests Meg Didier and Annie Ulchek, HLHS survivors, discuss the unique challenges they face. We cover a range of sensitive topics such as the role of fathers, the experiences of career moms, and the emotional toll on siblings. Discover how CBD and THC are being used for anxiety and pain management, and meet a father who opens up about the scars left by navigating the challenge of raising a child with a CHD while also parenting two heart-healthy children. We cap off by emphasizing the importance of awareness initiatives like placing AEDs in schools and invite you, our listeners, to contribute your stories and feedback for future projects.

Previous episodes mentioned in this podcast episode:

The Courageous Chronicle of HOpe: From Heart Surgery to Self-Discovery https://www.buzzsprout.com/62761/episodes/15027473

Congenital Heart Defects and Gender Identity: https://www.buzzsprout.com/62761/11506572

LBGTQ+ and the CHD Community:
https://www.buzzsprout.com/62761/episodes/11968012

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Send us a text

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-group

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Send us a text

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.

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
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Website

Send us a text

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/CHCPodcastApple

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Send us a text

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/

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Send us a text

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.com

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Support the show

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website