Heart to Heart with Anna Anna Jaworski

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

Baby Blue Sound Collective

Social Media Pages:

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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
Support the Show.
Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

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

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

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

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

When Ellen Boyer graced our show with her story of love and resilience, it was clear that her daughter Brett, who blessed the world with her presence despite Down syndrome and a congenital heart defect, has sparked a legacy that transcends every stereotype. Through the Brett Boyer Foundation, Ellen's dedication to challenging limitations and advocating for CHD research is a beacon of hope that lights up our latest episode. As we celebrate World Down Syndrome Day, we invite you into our heartwarming discussion and extend an open hand for you to join us in spreading the message for World Down Syndrome Day: Stop the Stereotypes.

In the 2nd and 3rd segments of the episode, you'll hear co-editors Megan Tones and Anna Jaworski reading from The Heart of a Heart Warrior Volume 2: Endurance. This week they're reading essays from Chapter 5 in anticipation of the next Baby Hearts Press Book Study, which starts on World Down Syndrome Day (March 21st) from 5-6 PM USA CDT.

It's the personal journeys that often strike the deepest chord, and this chapter resonates with stories of tenacity and the transformative power of companionship. Listen to the heartening tale of Monica Mossey and her service dog Jax, whose bond exemplifies the extraordinary support that can come from our four-legged friends. The courage of Tracey Grasty, through multiple heart surgeries and life's relentless challenges, will remind you of the strength that lies within our community, and the remarkable resilience we can muster when faced with life's daunting obstacles.

We round out the conversation by stepping into the shoes of those whose professional lives are shaped by their personal experiences with congenital heart disease. From Victoria Scoggins' journey into healthcare administration to Megan Tones' research in rare diseases, these narratives showcase the depth of impact that personal health can have on career choices and the contributions these individuals make to the healthcare field. We end the chapter with an essay by heart warrior and nurse, Roslyn Rivera--a nurse whose practice spanned the globe. As your host, Anna Jaworski, I'm here to reaffirm that the power of advocacy and community is just a heartbeat away, and together, we can navigate the landscapes of the heart with courage, dedication, and hope.

Websites mentioned in this episode:

Baby Hearts Press: https://www.babyheartspress.com

The Brett Boyer Foundation: https://www.thebrettboyerfoundation.org/
Support the Show.
Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

In this episode of Heart to Heart with Anna we welcome Frank Jaworski back to the program. Frank shares information about anesthesia when patients go to the electrophysiology lab (EP lab), especially when they need to undergo an ablation.

Frank is a certified, registered nurse anesthetist (CRNA) and he has been delivering anesthesia for over 23 years. One of his favorite departments to work with is the EP lab. In this episode, Frank shares some tips to help those in the congenital heart defect community reduce their concerns when visiting the EP lab, he offers some helpful questions patients can ask their anesthesia providers, and even shares some tips for how to reduce anxiety during their EP visits.

The 2nd and 3rd Segments involve Anna reading from The Heart of a Heart Warrior Volume Two: Endurance.  This is one of the newest books from Baby Hearts Press. This is the second in a 3-book series of essays and works of art by adults with congenital heart defects.

In this podcast episode, Anna will read from the front matter of the book, including the Foreword, Preface, and Introduction.

Baby Hearts Press is hosting a Book Study for those interested in meeting some of the contributors to ask questions, as well as an opportunity to share their own experiences related to the topics discussed in the book. The Book Study for Volume Two begins on Thursday, March 24th from 5-6 PM Central Daylight Savings Time and runs for 4 consecutive Thursdays. To get a ticket to attend for only $10 per session, visit https://www.babyheartspress.com.
Support the show
Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website