This is the 3rd episode in our CHD Spotlight mini-series and we'll be talking about Tetralogy of Fallot.

Our expert Guest is Roslyn Rivera and she is a pediatric cardiology nurse who was also born with a congenital heart defect. In this episode, Roslyn shares with Anna what tetralogy of Fallot is, who coined the term for this complex congenital heart condition, what methods are used to palliate the condition, what some possible causes of the condition are, and survival rates for babies born with ToF.

In the second segment, Roslyn even shares the name of a famous athlete born with ToF, proving that ToF doesn't have to mean that a person will have an inferior life and that there is great hope for babies born with this heart condition today.

Other Heart to Heart with Anna episodes featuring Rosyln Rivera, RN:

Congenital Heart Defects Around the Globe: The Novak Cardiac Alliance
https://www.buzzsprout.com/62761/398936
A View From the Other Side of the Bed
https://www.buzzsprout.com/62761/499730
Nurse Burnout in the CHD Community Part 1
https://www.buzzsprout.com/62761/2773843
Nurse Burnout in the CHD Community Part 2
https://www.buzzsprout.com/62761/2839018 Support the Show. Anna's Buzzsprout Affiliate Link

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CHD Spotlight #3: Tetralogy of Fallot

Revitalize your spirit and connect with the vibrant congenital heart defect (CHD) community through 'Heart to Heart with Anna,' the pioneering podcast that has been inspiring and informing listeners since 11-12-13. Join us as we dive deep into the personal journeys, triumphs, and challenges of Survivors, their loved ones, esteemed medical professionals, and other remarkable individuals within the CHD community.

 With unwavering dedication, our heartfelt conversations bring to light the stories that need to be heard. Gain invaluable insights, expert advice, and a sense of empowerment as we explore the multifaceted world of CHD. Our mission is to uplift, educate, and enrich the lives of every member of this incredible community.

 Embark on a transformative listening experience where compassion and understanding thrive. Discover the resilience and unwavering spirit that reside within each person touched by CHD. Together, let's build a community where support and knowledge flourish, bringing hope to the forefront.

 Tune in to 'Heart to Heart with Anna' and embark on a remarkable journey that will leave you inspired, enlightened, and connected to the beating heart of the CHD community.

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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

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Embracing Life's Pulse Amidst HLHS and PLE Hurdles with Hollie Stephenson

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 
 Support the Show. Anna's Buzzsprout Affiliate Link

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Navigating the Emotional Landscape of Raising Children with Congenital Heart Defects

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 Support the Show. Anna's Buzzsprout Affiliate Link

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Heart Mom Kelsi Rogers on Jett's Electrical Problems with His Heart

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 
 Support the Show. Anna's Buzzsprout Affiliate Link

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An Author for CHD Adults with Learning Disabilities: Deanna Altomara

When Ellen Boyer's voice joins the conversation, the room lights up with an array of heartfelt stories and powerful messages. Together, we celebrate World Down Syndrome Day by shattering stereotypes and trumpeting the accomplishments of those with Down Syndrome. From the awe-inspiring feat of Chris Nikic, the first athlete with Down Syndrome to conquer an Ironman triathlon, to the everyday triumphs of individuals leading vibrant, fulfilling lives, our dialogue serves as a rallying cry for inclusion and appreciation of every person's inherent worth.

The legacy of Brett Boyer shines on, as we discuss the foundation in her memory that advocates for CHD research and support, reminding us how one life can ripple through the hearts of many. 

Co-editors Megan Tones and Anna Jaworski continue reading from The Heart of a Heart Warrior: Volume 2: Endurance.

Motherhood, with all its joys and challenges, takes on profound new dimensions when interwoven with congenital heart defects (CHD). The narratives of Megan Hanshew, Gwenyth Murphy, and others paint a poignant picture of resilience and transformation. We also celebrate the active lives of those like Tracie Wendorf-Salgado, living with pacemakers yet refusing to be held back, and Kimberly Russell, whose journey through CHD led to the joyous adoption of her daughter.

Join us for an episode that's as much about courage as it is about compassion. Hear the raw, unfiltered experiences of those who not only survive but thrive despite the presence of CHD. Be inspired by Kimberly Russell's volunteer work in education advocacy, and be moved by Tracie Wendorf-Salgado's near-miss on the highway, a stark reminder of the fragility of life and the indomitable human spirit. This is an ode to the tenacity of the heart, both literal and metaphorical, and an invitation to walk alongside these extraordinary individuals through their remarkable journeys.

Links mentioned in this episode:

The Brett Boyer Foundation: https://www.thebrettboyerfoundation.org/

Baby Hearts Press: https://www.babyheartspress.com Support the Show. Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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CHD Spotlight #3: Tetralogy of Fallot

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