Defect in the structure of the heart that is present at birth
POPULARITY
115 episodes with congenital heart defects
17 episodes with congenital heart defects
5 episodes with congenital heart defects
8 episodes with congenital heart defects
2 episodes with congenital heart defects
3 episodes with congenital heart defects
2 episodes with congenital heart defects
4 episodes with congenital heart defects
5 episodes with congenital heart defects
On the new episode of The 1 Girl Revolution Podcast, we welcome Lauren Costabile — founder of Hearts of Joy International, a nonprofit organization that provides life-saving heart surgery for children with Down Syndrome in developing countries and raises awareness about the dignity and value of every life. Lauren is a passionate advocate, speaker, and changemaker who has dedicated her life to serving children with Down Syndrome around the world. What began as a call placed on her heart quickly grew into a global mission—bringing hope, healing, and life-saving care to families who need it most. Hearts of Joy International now operates in multiple countries—including Uganda, the Philippines, Mexico, and India—partnering with doctors, hospitals, and families to ensure that children with Down Syndrome have access to the heart surgery they need to survive and thrive. In this episode, you'll hear: ❤️ Lauren's journey to founding Hearts of Joy International and what inspired her to take action; ❤️ The incredible impact Hearts of Joy is having in communities around the world; ❤️ Why children with Down Syndrome are often not able to receive surgery—and how Hearts of Joy is changing that; ❤️ Powerful stories of children and families whose lives have been transformed by this mission of this incredible organization; ❤️ The global need for awareness, inclusion, and dignity for people with Down Syndrome; ❤️ How you can get involved and support this life-saving work; ❤️ And so much more!
On this week's episode of The 1 Girl Revolution Podcast, we welcome Ellen Boyer — co-founder of The Brett Boyer Foundation, wife, mother, and advocate for individuals with Down Syndrome and congenital heart disease (CHD). Ellen and her husband Bo founded The Brett Boyer Foundation in memory of their beautiful daughter, Brett, who was born with Down Syndrome and a congenital heart defect. Though Brett's life was tragically short, her light continues to shine through the work of the foundation that bears her name. The Brett Boyer Foundation is dedicated to raising awareness for CHD—the most common birth defect in the world—and to celebrating the lives of individuals with Down Syndrome. In this powerful episode, Ellen shares her journey of grief, motherhood, and mission—and how she and Bo turned heartbreak into hope for others. Through education, advocacy, CHD grants, family support, and their joyful mission of love, The Brett Boyer Foundation is lighting up the world, one little legacy at a time. In this episode, you'll hear:
Brian Kellar, 2025 Phoenix Heart Walk Chair joins Chris and Joe this hour to share information about the 2025 Phoenix Heart Walk. Liam, a congenital heart defect survivor, shares his incredible story
CEO of Heart Children, Sheila Campbell, and mother Claire Byrne, join Joe to talk about congenital heart disease ahead of the upcoming annual conference for the charity Hosted on Acast. See acast.com/privacy for more information.
Globally, one in every hundred newborns is affected by Congenital Heart Defects. This is a condition that impacts the structure and function of the heart. South Africa is no exception, with numerous cases reported annually. Grateful Hearts, a non-profit organisation founded by Nhlamulo Tlakula-Sesing, seeks to raise awareness about this often-silent killer and advocate for the training of paediatric cardiac specialists to bolster the South African healthcare system
This week on The Beat, CTSNet Editor-in-Chief Joel Dunning recaps The Society of Thoracic Surgeons (STS) Annual Meeting in Los Angeles. He discusses Dr. Jennifer Romano's presidential address, remarks from incoming STS president, Dr. Joseph F. Sabik III, and the keynote addresses by Dr. Jennifer A. Dounda and photographer, filmmaker, and educator Ami Vitale. Joel also shares his top presentation picks from the meeting, including “Bioprosthetic vs Mechanical Aortic Valve Replacement in Patients 40-75 Years” by Dr. Vinay Badhwar, “DOAC for Mechanical AVR” by Dr. Joon Bum Kim, and “Surgeon Frequency for Multiarterial Grafting and 19-Year Outcomes After Coronary Artery Bypass Grafting in Over One Million Medicare Beneficiaries” by Dr. Justin Schaffer. Additionally, he covers the STS Evidence-Based Guidelines, an AI tool for medical information called OpenEvidence, and STS TV. Joel also reviews recent JANS articles on transcatheter versus surgical aortic valve replacement in patients younger than 65 years in the United States, post-implant transcatheter aortic prosthesis deformation, redo surgical aortic valve replacement for bioprosthetic structural valve deterioration, and five-year outcomes in low-risk patients undergoing surgery in the PARTNER 3 trial. In addition, Joel explores a hybrid debranching of aortic arch branches and endovascular repair of the aneurysm of the aortic arch and the thoracic aorta, handmade valved woven Dacron conduits as an alternative for repair of congenital heart defects, and how to remove a bioprosthetic mitral valve replacement. Before closing, he highlights upcoming events in CT surgery. JANS Items Mentioned 1.) Transcatheter Versus Surgical Aortic Valve Replacement in Patients Younger Than 65 Years in the US 2.) Post-Implant Transcatheter Aortic Prosthesis Deformation: Tricuspid Versus Bicuspid Valve 3.) Redo Surgical Aortic Valve Replacement for Bioprosthetic Structural Valve Deterioration 4.) Five Year Outcomes in Low-Risk Patients Undergoing Surgery in the PARTNER 3 Trial CTSNET Content Mentioned 1.) Hybrid Debranching of Aortic Arch Branches and Endovascular Repair of the Aneurysm of the Aortic Arch and the Thoracic Aorta 2.) Handmade Valved Woven Dacron Conduits as an Alternative for Repair of Congenital Heart Defects 3.) Redo Mitral Valve Surgery: How to Remove a Bioprosthetic Mitral Valve Replacement Other Items Mentioned 1.) STS TV 2.) CTSNet Events Calendar Disclaimer The information and views presented on CTSNet.org represent the views of the authors and contributors of the material and not of CTSNet. Please review our full disclaimer page here.
Congenital heart defects are the most common birth defect in the world. While the condition is easily treatable, many children lack access to the care they desperately need — that's where Save a Child's Heart steps in. This episode highlights the incredible work of this Israel-based global organization, which has saved over 7,000 children from 70 countries.-Jamie speaks with Executive Director Rabbi David Litwack and DC Director Ronit Totah about their efforts to expand their reach and empower communities worldwide, providing life-saving surgeries and medical training to doctors in developing countries. They share moving stories of recovery, the long-term impact of their work, and how they've continued their mission amid recent conflicts in Israel.-Save a Child's Heart ensures no child is left behind, regardless of borders or circumstances. -Connect with Save A Child's Heart:FacebookInstagramLinkedInYouTubeConnect with Jamie at Truman Charities:FacebookInstagramLinkedInWebsiteYouTubeEmail: info@trumancharities.comThis episode was post produced by Podcast Boutique https://podcastboutique.com/
This week we speak with noted interventional cardiologist Dr. Shyam Sathanandam of LeBonheur Children's Hospital in Memphis, TN about novel, 'off-label' uses of the Amplatzer Piccolo device in children. In what sorts of lesions does Dr. Sathanandam believe this device offers distinct advantages for vascular closure? What is the feature of this device that allows it to work for small defect closure so effectively and safely? Are there any new changes coming to this device or the delivery system for PDA closure in the premature infant? These are amongst the questions and topics reviewed with our guest this week!https://doi.org/10.1080/14796678.2024.2355057
August 2024: ECG Interpretation in Athletes and Emergency Care for Congenital Heart Defects by American College of Emergency Physicians
In today's episode we hear part 2 (of 3) of Amy's story--she talks about her induction and her experience becoming the parent of a baby with a significant heart condition, the operation that saved his life, and tips for parents who might find themselves the new minders of a fetus with a congenital heart defect. I also include the insights of a doctor who performs fetal cardiac ultrasound to understand that technology better. And the last thing I'll add in the interest of transparency, is that like Amy, my partner and I had a child with a significant congenital heart defect that required emergency surgery when she was born, so a lot of what she says really resonates with my experience. We pick up where we left off last week. Amy is learning about her future son's congenital heart defect from her doctor.
Send us a Text Message.What happens when resilience meets a congenital heart defect? Join us as we uncover the extraordinary journeys of women who have turned their medical challenges into stories of hope and triumph. Begin with Emily Falcon's deeply moving "A Letter to my Younger Self," where she offers wisdom and reflections that will resonate with anyone facing life's obstacles. Move to Michelle Anderson DeRoo's powerful tale in "Exceeding Expectations," where she sheds light on how advocacy and compassionate care can defy even the grimmest medical predictions. And don't miss Allison Holmes' insightful reflections from over 50 years of living with a single ventricle heart, offering lessons learned and immense inspiration.In Chapter 10 of "The Heart of a Heart Warrior," we delve into the emotional rollercoaster of growing up with a severe heart defect. Michelle's narrative takes us through the trials and triumphs, with low oxygen levels and dire prognoses threatening to derail dreams—until the compassionate Dr. Hurley steps in. Experience the harrowing and hopeful moments that underscore the necessity of perseverance, advocacy, and compassionate medical care in overcoming life-threatening health challenges. We also benefit from both Emily's and Allison's reflections on what they've learned growing up with heart defects.We close this chapter, and this episode, by exploring the unique psychological and emotional hurdles parents face when raising children with congenital heart defects. We discuss how the term "heart warrior" instills hope and courage amidst the unpredictability of chronic illness. Reflecting on the transformative advancements in pediatric cardiology, the collaborative efforts between healthcare professionals, and the unyielding support from parents, this chapter is a heartfelt tribute to the resilience and achievements of heart warriors and their families. Tune in to be inspired by stories that showcase the enduring spirit and remarkable strength of the congenital heart community.To buy this book, visit Baby Hearts Press (https://www.babyheartspress.com)Become a podcast subscriber: https://www.buzzsprout.com/62761/supportThanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!Support the Show.Anna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
Send us a Text Message.What happens when you're expecting a baby with a congenital heart defect during a global pandemic? Join me, Anna Jaworski, as I sit down with Amelia Woods, a courageous heart mom who faced this exact challenge. Amelia shares the emotional rollercoaster of managing her son Henderson's dextrotransposition of the great arteries (d-TGA) diagnosis at 25 weeks' gestation. We explore the intricate preparations for Henderson's birth and his crucial surgeries, including the atrial balloon septostomy and the arterial switch procedure, all while navigating the complexities imposed by Covid-19.Amelia and her husband, Richard, had to master the art of setting boundaries to protect their medically fragile newborn amidst an unprecedented health crisis. Amelia opens up about the isolation they felt and the essential bonding time that these boundaries provided. She candidly discusses the importance of connecting with other heart moms for support, while also maintaining a degree of privacy for Henderson's future. Together, they reveal their strategies for navigating the postpartum period and the significance of familial support during such trying times.In this heartfelt episode, we also spotlight Amelia's advocacy within the congenital heart defect (CHD) community. By writing a book, "The Boy Born Brave," Amelia is a beacon of resilience and activism. We delve into actionable steps you can take to raise awareness and support the CHD community, including nonprofit fundraisers and heart walks. Tune in to learn how combining unique talents can drive nonprofit success and how you, too, can make a difference in the lives of children with CHD.Information Mentioned in the Episode:Amelia's website: https://heartlikeamother.com Amelia's shop: @heartlikeamother.shopAmelia on Instagram: @heartlikeamotherBecome a subscriber: https://www.buzzsprout.com/62761/supportWe appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!Support the Show.Anna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
Commentary by Dr. Candice Silversides
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/heartfeltscreeningTiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrotHeartWorks: https://www.hlhsconsortium.org/heartworks/Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/newSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
In this episode, we review the high-yield topic of Other Cyanotic Congenital Heart Defects from the Cardiovascular section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets Linkedin: https://www.linkedin.com/company/medbullets
Listen to how Harnessing the Power of Breathwork for Health and Recovery Can Help You to Biohack Aging! This podcast episode features a detailed conversation with Debbie Gutierrez about the vital role of breathwork in health, recovery, and wellbeing. Debbie shares her personal health journey, including her battle with fatigue, pain, and eventually being diagnosed with endocarditis stemming from a congenital heart defect, leading to open heart surgery and a stroke that affected her memory and cognitive functions. The host and Debbie delve into the science and benefits of breathwork, discussing how proper breathing techniques can significantly influence our physical and mental health. They explore various breathwork practices, including functional breathing exercises for stress reduction, energy enhancement, and improving physiological functions like digestion and sleep. The conversation also touches on the impact of proper breathing on weight loss, chronic disease, and overall longevity. Through personal anecdotes and expert insights, the episode illuminates the profound effects of incorporating mindful breathing into daily life and provides actionable advice for listeners to start practicing breathwork for improved health and wellness. Deb Gutierrez is a Certified Nutritional Therapist and a Functional and Therapeutic Breathwork Practitioner. In her practice, she uses nutrition, movement, and the breath to prevent and help those with metabolic disease, heart conditions, stress, and anxiety. In December 2021, Deb discovered she was born with a Congenital Heart Defect, had an embolic stroke, and underwent Open Heart Surgery. She found the power of the breath after going through the healing process. In her practice with clients, she finds stress, anxiety, and fear to be the common denominators that lead to illness and uses the healing power of the breath with clients to feel well, be well, and live well. Deb Gutierrez Holistic Nutritional Therapist, NTP, RWP, FTBP Functional & Therapeutic Breathwork Practitioner www.debghealth.com Deb G Health, LLC Becoming Ageless Podcast Producer/Host: Robynn Lin Fredericks, BCHHP www.BecomingAgeless.net IG: @BecomingAgelessPodcast *Please note the the links below are vetted for purity and we work to get you the best discount allowed! We receive a small commission when you purchase a product, which goes to further the show, production, and deep dives, as we offer our show for no charge in hopes of reaching as many as possible! THANK YOU for your support, it truly means the world!! Timeline, powered by Mitopure, the only nutrient unlocking a precise dose of the rare Urolithin A molecule and clinically-proven to revitalize mitochondria, the energy factories within our cells. RECEIVE 10% discount: https://bit.ly/3OiaCJv Coupon code: ROBYNNLIN SIV: a biome skin serum using quorum sensing, perfect for skin ailments and aging! RECEIVE 10% discount: https://sivcare.com/?oid=1&affid=14 Use the code AGELESS FullScript - professional and verified online supplement dispensing solution. RECEIVE 15% discount and set up a FREE account allowing you to subscribe and save! https://us.fullscript.com/welcome/rfredericks1692634008 Thank you for hanging out with us and if you have any questions regarding the show, jump over to the poster-post, for this show, on IG, and drop us a comment! In the meantime, please be sure to like (when able) the show and tell your friends! Information in this show is NOT intended to replace medical advice from your own physician, rather to be seen as one of many integrative approaches some have used and should be discussed with your team of doctors. 00:00 Welcome to the Show: A Conversation with Debbie Gutierrez 00:59 Debbie's Health Journey: From Fatigue to Heart Surgery 05:02 The Road to Recovery: Open Heart Surgery and Its Aftermath 05:58 Strength Training and Nutrition: Keys to Debbie's Survival 08:32 The Power of Play and Keeping the Brain Young 09:27 Diving Into the Art of Breathing 10:15 Understanding the Science of Breathwork 15:46 The Impact of Breathing on Health and Anxiety 23:45 Exploring Carbon Dioxide Tolerance and Its Benefits 29:40 Breathing Techniques and Their Role in Longevity 33:48 Respiratory Rates and the Importance of Proper Breathing 37:19 The Basics of Breathwork: Where to Start 38:22 Breathwork for Stress Relief and Better Health 39:03 Unlocking Weight Loss Through Proper Breathing 39:30 Exploring the Science Behind Breathwork and Weight Loss 42:22 The Power of Mouth Taping for Improved Breathing 48:29 Breathwork Techniques for Different Needs 56:16 Incorporating Breathwork into Daily Life for Better Health 58:19 Breathwork and Digestion: Enhancing Mealtime Mindfulness 01:05:23 Starting Your Breathwork Journey: Practical Tips 01:08:45 Closing Thoughts and How to Connect for More Insights --- Send in a voice message: https://podcasters.spotify.com/pod/show/becoming-ageless/message
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.comSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
In this episode of Stories from the River, host Charlie Malouf continues his conversation with Dr. Timothy Nelson, Founder and CEO of HeartWorks. They discuss how HeartWorks is focused on using innovative technology to address heart failure, particularly through the development and transplantation of autologous heart tissue. HeartWorks was the first organization in the world to obtain FDA approval to do an autologous heart transfer procedure. Dr. Nelson explains the complex, 9-month process of manufacturing cells from a patient's own body to create beating heart tissue, which can then be transplanted back into the patient without rejection. He also shares success stories of patients who have benefitted from these groundbreaking procedures, highlighting the transformative outcomes that HeartWorks is aiming to achieve. The episode also delves into the purpose, vision, and mission of HeartWorks, emphasizing the urgency to treat congenital heart disease (CHD) and its commitment to redefining the possibilities in medical research. HeartWorks builds hearts to cure CHD. They are a clinical stage nonprofit working to make that vision a reality. Dr. Nelson explains the 5 things that they think about at HeartWorks: 1. Motivated by the urgency of congenital heart families. Put the patient first. 2. Motivated by transformative outcomes. A pathway to a cure. To go rebuild the heart to have a transformative outcome. 3. Undeterred by obstacles. No way that this will be a linear path. No way that this will be simple. 4. Synergistic and winnable for hospitals and patients. Inspire, motivate, and align people. 5. Committed to a self-reliant ecosystem. Building a platform where this technology can be applied to anybody with heart failure. Dr. Nelson introduces the transformative concept of data donation, where individuals with congenital heart disease can contribute their medical records to create a repository that will revolutionize the way medical research is conducted, potentially leading to faster and more targeted product development. HeartWorks created a new movement around "Data Donation" when they launched a Co-Op at their annual fundraiser event with the goal of getting 50,000 people with CHD to donate their data, which Dr. Nelson explains with accelerate their clinical trials by 4X. As Dr. Nelson explains, no hospital is large enough to take on a challenge such as this on their own; however, HeartWorks as a nonprofit, trusted partner can work across any hospital and bring patients together to create this transformative data repository. Dr. Nelson emphasizes that it is important for patients to realize that they own their medical records, not hospitals, and can donate their medical records data (such as history of surgeries and cardiac imaging). Charlie and Dr. Nelson discuss the relationship between HeartWorks, Ashley Furniture, and Broad River Retail and the benefits that each organization receives from the relationship transcends monetary value. This conversation underscores the collaborative and transformative nature of HeartWorks' work as well as its reliance on community support and partnerships to drive the organization's mission forward. This episode on YouTube: https://youtu.be/Ea1C-msQk_k Additional Resources: HeartWorks - https://www.webuildhearts.org Listen to part one of the HeartWorks conversation here: https://www.youtube.com/watch?v=vIJAImWjRRw This episode on YouTube: https://youtu.be/vIJAImWjRRw Visit https://www.storiesfromtheriver.com for more episodes.
In this episode of Stories from the River, host Charlie Malouf continues his conversation with Dr. Timothy Nelson, Founder and CEO of HeartWorks. They discuss how HeartWorks is focused on using innovative technology to address heart failure, particularly through the development and transplantation of autologous heart tissue. HeartWorks was the first organization in the world to obtain FDA approval to do an autologous heart transfer procedure. Dr. Nelson explains the complex, 9-month process of manufacturing cells from a patient's own body to create beating heart tissue, which can then be transplanted back into the patient without rejection. He also shares success stories of patients who have benefitted from these groundbreaking procedures, highlighting the transformative outcomes that HeartWorks is aiming to achieve. The episode also delves into the purpose, vision, and mission of HeartWorks, emphasizing the urgency to treat congenital heart disease (CHD) and its commitment to redefining the possibilities in medical research. HeartWorks builds hearts to cure CHD. They are a clinical stage nonprofit working to make that vision a reality. Dr. Nelson explains the 5 things that they think about at HeartWorks: 1. Motivated by the urgency of congenital heart families. Put the patient first. 2. Motivated by transformative outcomes. A pathway to a cure. To go rebuild the heart to have a transformative outcome. 3. Undeterred by obstacles. No way that this will be a linear path. No way that this will be simple. 4. Synergistic and winnable for hospitals and patients. Inspire, motivate, and align people. 5. Committed to a self-reliant ecosystem. Building a platform where this technology can be applied to anybody with heart failure. Dr. Nelson introduces the transformative concept of data donation, where individuals with congenital heart disease can contribute their medical records to create a repository that will revolutionize the way medical research is conducted, potentially leading to faster and more targeted product development. HeartWorks created a new movement around "Data Donation" when they launched a Co-Op at their annual fundraiser event with the goal of getting 50,000 people with CHD to donate their data, which Dr. Nelson explains with accelerate their clinical trials by 4X. As Dr. Nelson explains, no hospital is large enough to take on a challenge such as this on their own; however, HeartWorks as a nonprofit, trusted partner can work across any hospital and bring patients together to create this transformative data repository. Dr. Nelson emphasizes that it is important for patients to realize that they own their medical records, not hospitals, and can donate their medical records data (such as history of surgeries and cardiac imaging). Charlie and Dr. Nelson discuss the relationship between HeartWorks, Ashley Furniture, and Broad River Retail and the benefits that each organization receives from the relationship transcends monetary value. This conversation underscores the collaborative and transformative nature of HeartWorks' work as well as its reliance on community support and partnerships to drive the organization's mission forward. This episode on YouTube: https://youtu.be/Ea1C-msQk_k Additional Resources: HeartWorks - https://www.webuildhearts.org Listen to part one of the HeartWorks conversation here: https://www.youtube.com/watch?v=vIJAImWjRRw This episode on YouTube: https://youtu.be/vIJAImWjRRw Visit https://www.storiesfromtheriver.com for more episodes.
Like most nine-year-olds, Finn loves fun. Whether it's going for a swing in his backyard playground or playing with his pets, there's not much that slows him down except sometimes his heart condition "I was diagnosed with CHD, Congenital Heart Defect," Finn said. "Unlike normal kids I have a limit so I can't really run around for that much longer." "We had never heard of CHD, we had never even heard of open-heart surgery in a baby," said Finn's mother, Kelly Blumenthal. "That was something that was not even on our radar at all." Blumenthal says she was first alerted...Article LinkSupport the show
Guest: Dr. Daniel Penny Chief, Pediatric Cardiology Professor and Chief of Pediatric Cardiology, Baylor College of Medicine Co-Director, Texas Children's Heart Center Professor and Chief of Pediatric Cardiology, Baylor College of Medicine In this episode: List at least one reason why neonates are more susceptible to congenital heart defects. Name two advancements in pediatric cardiac care in the last decade. Explain the most common symptoms of two of the three heart conditions: PDA, VSD or HLHS. This episode is eligible for CEUs. Visit https://handtohold.org/resources/podcasts/nicu-heroes/ to complete the questionnaire. It is the sole responsibility of the individual to verify if this credit is valid and eligible for use in your State and/or for your discipline for licensure or certification renewal.
Navigating life with congenital heart defects (CHD) is a journey of resilience and emotional fortitude. As I converse with my fellow heart mom, Rita Scoggins, we unearth the layers of complexity that come with raising adult children affected by CHD. This episode goes beyond the clinical; it's an intimate foray into the emotional and logistical preparations for life's greatest certainties, including power-of-attorney arrangements and will preparations, while also considering the implications for our adult children and beloved pets upon our passing.Segment 2 showcases co-editors Megan Tones and Anna Jaworski reading Chapter 2 of The Heart of a Heart Warrior Volume One: SurvivalThe heart of the chapter beats to the rhythm of personal stories that exemplify the myriad ways individuals with CHD find identity and purpose. From Hope's inspiring transition and embrace of her true self as a transgender woman, to Jason Crutchley's dedication to volunteerism, and Christie Sillman's leap into a nursing career, these narratives are a testament to the strength found in the CHD community. These journeys illuminate how our warriors, often dubbed so for their battles against physical conditions, also strive for agency and the power of choice in defining their lives.Segment 3 showcases the first two essays from Chapter 3 of The Heart of a Heart Warrior Volume One: SurvivalPhysical activity, often seen as a mountain too high for those with CHD, emerges as a pinnacle of personal triumph in these essays. Lorrie Hill's career pivot, and Michael Hills' adaptation to sports outside his initial dreams, are stories that underscore the tenacity of the human spirit. These anecdotes are not just about overcoming limitations, but about redefining personal goals and embracing one's passions, all while living with the realities of a congenital heart condition. Join us for this heartfelt exploration of life's challenges and victories.Won't you join us while we discuss these essays in our next Book Study? Co-editors Megan Tones and Anna Jaworski are joined by contributors to the book and others who want to discuss the topics raised in the book. These 1-hour sessions take place on Zoom. Visit Baby Hearts Press for more information.Did you miss hearing Chapter One or the Front Matter of the book? Here are the links:Front matter (Foreword, Preface, and Introduction): http://tinyurl.com/H2HwAnnaE434Chapter 1: http://tinyurl.com/H2HandChapter1February 2024 Baby Hearts Press announcementSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
On this special episode of Raising Joy, we welcome Cook Children's cardiologist Kevin Wilkes, M.D. Join us as we delve into the intricate connection between congenital heart defects and mental health, as Dr. Wilkes sheds light on how conditions like anxiety, depression and ADHD intersect with heart health.
Join Sheila and Sara this week as they cover cystic fibrosis, asthma and congenital heart defects. Make sure you are supplementing our conversation with charts, tables and pictures from the Campbell text referenced below and don't forget the Case Files book case studies. Cheers and happy listening! Affiliate Codes: ------------------------------------------ Medbridge Affiliate website: https://www.medbridgeeducation.com/pushing-pediatrics Medbridge Affiliate Code: PUSHINGPEDS ----------------------------------------- Resources: Palisano, R. J., Orlin, M. N., & Schreiber, R. (2023). Campbell's physical therapy for children. Elsevier.
In this episode, our guest James Robinson will share the keys to living life to its fullest, both inside and outside of the hospital, so that you can provide the result of bringing joy and happiness to your child's life, despite their medical condition. James Robinson, the author of the book "More Than we expected". On today's epsidoe he shares his personal experience as a parent of a child with a congenital heart defect. Living in Brooklyn, New York, James and his wife have three children, one of whom was born with a serious congenital heart defect. They navigated their way through multiple surgeries and hospital stays, learning valuable lessons along the way. James's story highlights the importance of holistic care and the impact of medical professionals, from doctors to Child Life specialists, in providing support to families. James and his family found strength and created meaningful experiences for their child. It was a privilege to be his father. We learned a lot through our journey about what it means to live when you have a medical condition. - James Robinson In this episode, you will be able to: Discover the transformative power of parenthood and how it can bring joy and strength in the face of medical challenges. Explore the importance of transparency in navigating the realities of your child's medical condition, and how open communication can benefit both you and your child. Learn how child life specialists in hospitals can provide support and create meaningful experiences for your child during their medical journey. Find inspiration in stories of resilience and the power of support from other parents who have faced difficult times with their children's medical conditions. Discover practical strategies for balancing fear and living a fulfilling life, while still prioritizing your child's health and well-being. Connect with James Learn more about James' book here. Link to purchase "More than we Expected" To request bookplates and oregano seeds: https://morethanamemoir.com/bookplates/ Social media: FB: MoreThanAMemoir Instagram: MoreThanAMemoir X/Twitter: MoreThanAMemoir All best The key moments in this episode are: 00:00:00 - Introduction 00:00:40 - Purpose of the Podcast 00:02:07 - Story of James' Son 00:05:15 - Balancing Fatherhood and Medical Care 00:07:01 - Trip to Australia and Medical Emergency 00:09:18 - Differences in Medical Practices 00:10:04 - Heart Beads 00:13:11 - The Miracle of the Body Formation 00:14:00 - Trusting the Body's Processes 00:15:47 - Accepting Things Beyond Control 00:16:22 - Challenges of Living in Another Country for Medical Treatment 00:19:26 - The Healing Power of Nature 00:25:34 - The Impact of Therapists 00:26:01 - Exploring the Hospital 00:27:09 - Going Outdoors 00:28:19 - Unexpected Kitchen Visit 00:31:30 - Balancing Fear and Living 00:37:34 - The Purpose of Writing the Book 00:38:01 - The Importance of Child Life 00:38:48 - Parenthood and Self-Discovery 00:40:53 - Availability of the Book 00:42:31 - Conclusion and Resource Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. Parents, download our free parent starter kit. When you download our starter kit, you'll learn how to: Give medicine to your child without it becoming a wrestling match Prepare your child (and yourself) for a shot so they can feel less anxious Create and use a coping plan for any medical appointment or procedure The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing. Child life specialists, get affordable PDUs on-demand here. Shop for your CLOC gear here.
McKenzie experienced the infant loss of her son, Theo, due to complications from a congenital heart defect. She discusses her experience after his birth and leading up to his death, along with her experience after her loss. --- Support this podcast: https://podcasters.spotify.com/pod/show/findinghopeafterloss/support
How does a young child learn to fight, to survive, and even thrive when they're born battling a congenital heart defect? Join us as we journey through the inspiring life stories of Emily Falcon and Mabel, two extraordinary women who refused to let their heart conditions define them. Emily, born with the rare ALCAPA--Anomalous Origin of the Left Coronary Artery arising from the Pulmonary Artery, takes us through her harrowing experiences with two open-heart surgeries, and how these experiences have shaped her into the woman she is today. Have you ever wondered how the body adapts itself to survive a chronic illness? Emily provides a firsthand account of her body's fight for survival, and the challenges she faced, leading to her penning down a memoir about living with chronic illness. Listen to her describe the difficulties she faced in expressing her emotions, the support she found in her friendship with Mabel, and their collective efforts to raise awareness of those with congenital heart defects. Discover the depth of Emily and Mabel's friendship, born out of shared experiences and a summer camp for children with congenital heart defects. Hear them discuss the power of being your own advocate, the strength they found in their enduring friendship, and the importance of resources like Emily's book for others going through similar experiences. Through special memories, advice for others, and a best friend's forever necklace, Emily and Mabel exemplify the extraordinary strength of the human spirit in their battle with congenital heart defects. Join us as they share their inspiring stories, and remind us that it is not our challenges that define us, but how we respond to them.Link to Emily's Book: https://www.babyheartspress.com/emily-falconSupport the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
In this episode of CTSNet's flagship podcast, editor in chief Joel Dunning runs through the latest, most popular content on ctsnet.org—the largest online community of CT surgeons and source of CT surgery information—and breaking cardiothoracic surgery news and research from around the world. Joel discusses the first autoregulated total artificial heart implant in the United States, a study of on-table chest drain removals, and the association between fluoroquinolone use and hospitalization with aortic aneurysm. He also talks about an off-pump technique for aortic arch debranching, another recording from AATS 2023, and the recent congenital cardiac Guest Editor Series. After discussing upcoming events in the CT surgery world, he closes with a shoutout to the father of modern mitral valve repair, Alian Carpentier. JANS Items Mentioned The First Autoregulated Total Artificial Heart Implant in the United States Are Chest Drains Routinely Required After Thoracic Surgery? A Drainology Study of On-Table Chest Drain Removals Association Between Fluoroquinolone Use and Hospitalization with Aortic Aneurysm or Aortic Dissection CTSNet Content Mentioned Aortic Arch Debranching: The Off-Pump Technique ATAS 2023: Subannular Bioconduit Implantation Guest Editor Series: Right Axillary Thoracotomy for Repair of a Wide Variety of Congenital Heart Defects in Infants and Children—Should This Be the New Standard? Other Items Mentioned CTSNet Events Calendar Disclaimer The information and views presented on CTSNet.org represent the views of the authors and contributors of the material and not of CTSNet. Please review our full disclaimer page here.
Rafael Barlowe and Leif Thulin share their thoughts on Bronny James's immediate future after it was announced a congenital heart defect caused him to go into cardiac arrest during a basketball workout at the University of Southern California last month.Barlowe and Thulin discuss redshirting, his draft stock and the pressure of playing in the shadows of his famous father.Support Us By Supporting Our Sponsors!IbottaRight now, Ibotta is offering our listeners $5 just for trying Ibotta by using the code locked when you register. Just go to the App Store or Google Play store and download the FREE Ibotta app and use code LOCKED.BirddogsGo to birddogs.com/LOCKEDONNBA or enter promo code LOCKEDONNBA for a free white tech hat with any purchase. You won't want to take your birddogs off we promise you.FanDuelThis episode is brought to you by FanDuel Sportsbook, Official Sportsbook of Locked On. Right now, NEW customers can bet FIVE DOLLARS and get TWO HUNDRED in BONUS BETS - GUARANTEED. Visit FanDuel.com/LOCKEDON to get started. FANDUEL DISCLAIMER: 21+ in select states. First online real money wager only. Bonus issued as nonwithdrawable free bets that expires in 14 days. Restrictions apply. See terms at sportsbook.fanduel.com. Gambling Problem? Call 1-800-GAMBLER or visit FanDuel.com/RG (CO, IA, MD, MI, NJ, PA, IL, VA, WV), 1-800-NEXT-STEP or text NEXTSTEP to 53342 (AZ), 1-888-789-7777 or visit ccpg.org/chat (CT), 1-800-9-WITH-IT (IN), 1-800-522-4700 (WY, KS) or visit ksgamblinghelp.com (KS), 1-877-770-STOP (LA), 1-877-8-HOPENY or text HOPENY (467369) (NY), TN REDLINE 1-800-889-9789 (TN) Learn more about your ad choices. Visit podcastchoices.com/adchoices
Rafael Barlowe and Leif Thulin share their thoughts on Bronny James's immediate future after it was announced a congenital heart defect caused him to go into cardiac arrest during a basketball workout at the University of Southern California last month. Barlowe and Thulin discuss redshirting, his draft stock and the pressure of playing in the shadows of his famous father. Support Us By Supporting Our Sponsors! Ibotta Right now, Ibotta is offering our listeners $5 just for trying Ibotta by using the code locked when you register. Just go to the App Store or Google Play store and download the FREE Ibotta app and use code LOCKED. Birddogs Go to birddogs.com/LOCKEDONNBA or enter promo code LOCKEDONNBA for a free white tech hat with any purchase. You won't want to take your birddogs off we promise you. FanDuel This episode is brought to you by FanDuel Sportsbook, Official Sportsbook of Locked On. Right now, NEW customers can bet FIVE DOLLARS and get TWO HUNDRED in BONUS BETS - GUARANTEED. Visit FanDuel.com/LOCKEDON to get started. FANDUEL DISCLAIMER: 21+ in select states. First online real money wager only. Bonus issued as nonwithdrawable free bets that expires in 14 days. Restrictions apply. See terms at sportsbook.fanduel.com. Gambling Problem? Call 1-800-GAMBLER or visit FanDuel.com/RG (CO, IA, MD, MI, NJ, PA, IL, VA, WV), 1-800-NEXT-STEP or text NEXTSTEP to 53342 (AZ), 1-888-789-7777 or visit ccpg.org/chat (CT), 1-800-9-WITH-IT (IN), 1-800-522-4700 (WY, KS) or visit ksgamblinghelp.com (KS), 1-877-770-STOP (LA), 1-877-8-HOPENY or text HOPENY (467369) (NY), TN REDLINE 1-800-889-9789 (TN) Learn more about your ad choices. Visit podcastchoices.com/adchoices
Robby Benson is living proof that character is destiny, guided by his values, integrity, talent and curiosity, Robby has overcome much to achieve more. He is an actor, writer, producer, director, author, musician, photographer, professor, songwriter, novelist, activist and former teen idol! Robby's early screen stardom was just scratching his creative surface and Robby's immense devotion to his wife and family only deepen his appreciation of life and its gifts. Robby joins us to talk about his strong family bonds, his collaborations with his fiercely talented wife Karla DeVito, his extraordinary parents, including his Mom who is Fritz's upstairs neighbor. We eagerly await that sit-com. For hardcore Robby Benson heartthrob film fans, we do get into Ode to Billy Joe, Ice Castles, Lucky Lady and One on One. Robby also offers a master class in heart health care, sharing his personal journey through four open heart surgeries to correct a congenital defect. In true Robby fashion, he carved his struggle into art, writing the book, “I'm Not Dead…Yet,” which he then adapted into the musical Open Heart.Robby has directed over 100 episodes of network sitcoms and his first novel, “Who Stole the Funny,” is a fictionalized account of one disturbingly harrowing week he spent on the set of a “make-believe” show.Robby also joins us for a spirited round of Media Path's favorite pretend game show, “IMDB Roulette” Robby is currently working on paying tribute to his late father and co-writer, Jerry Segal with a play which will feature their music. Additionally, it's still top secret but Robby is starring in the second season of Sevarance.Plus, Fritz and Weezy are recommending The Hollies: Look Through Any Window on FreeVee, Painkiller on Netflix and the Barbie movie.Path Points of Interest:Robby BensonRobby Benson in WikipediaRobby Benson on IMDBModern Love (1990)Robby Benson on YouTubeThe More I Think About It AllBROKEN by Robby Benson with Karla DeVitoBooks by Robby BensonI'm Not Dead...Yet!Who Stole The FunnyThe Hollies: Look Through Any WindowPainkiller - NetflixThe Barbie Movie
As a heart mom myself, I know firsthand the unique challenges that come with raising a child with both a congenital heart defect and autism. That's why I invited Melanie Letzer and Kelly Blumenthal to join me for a candid conversation about their experiences navigating this complex journey. Together, we discuss the importance of trusting your instincts, seeking early intervention, and finding the right support system for your family.In this heartfelt episode, we explore the challenges of getting a diagnosis and the critical role of having an IEP in place to support our children. We share our experiences with ABA therapy during the pandemic and how it has helped us better understand our children's behavior. We also discuss the importance of connecting with other parents for emotional and practical support, and how tenacity and a willingness to try different approaches are essential when it comes to finding the right program for your child.Our journey as parents has shown us the power of advocacy within the congenital heart community. Throughout this episode, we emphasize the need for early intervention, support, and utilizing trusted medical resources to provide the best help for our children. By sharing our experiences, we hope to inspire and empower you to become an advocate for the congenital heart community, and ensure that our neurologically and cardiac-challenged children receive the care and attention they deserve.Just a quick shout-out to all of the amazing supporters who like, share, and comment on our program via Facebook and Instagram. Thank you all!Support the showAnna's Buzzsprout Affiliate LinkBaby Blue Sound CollectiveSocial Media Pages:Apple PodcastsFacebookInstagramMeWeTwitterYouTubeWebsite
In this episode, we review the high-yield topic of Other Cyanotic Congenital Heart Defects from the Cardiovascular section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets
On the 73rd Episode of The Paul Cardall Podcast, HeartCharged Executives Hannah and her sister Bethany Keime talk about their personal experience with Hypertrophic cardiomyopathy (HCM) and what they're doing to help others live longer. Their disease is a common cause of sudden deaths among athletes. Paul, Bethany, and Hannah describe the disease and what they are doing to bring awareness and legislation to ensure a defibrillator is in every school and public building.VISIT THE OFFICIAL PODCAST WEBSITE:https://paulcardall.com/podcast ABOUT THE HEART IN HEARTCHARGED Website: http://getheartcharged.orgInstagram: https://www.instagram.com/heartchargedAccording to the HeartCharged website, “Once upon a time we were average high-school girls. Then we were diagnosed with hypertrophic cardiomyopathy (HCM), which is better than not being diagnosed but not as good as not having it. We were extremely athletic and HCM is the #1 killer of student athletes. It is asymptomatic so it most often kills without warning. But we were screened and found out we had it.” “We were immediately put on medications and made life-style changes so that our heart rates wouldn't go up causing our hearts to fibrillate causing us to die. Then the condition got worse and those precautions weren't deemed enough, so we had defibrillators implanted. The device would shock our hearts if they went out of control. Of course, we still take medications and are careful how we live.” They continue, “We are so grateful to have found out and be managing our conditions. With that gratitude, we are trying to warn the world. Childhood deaths from undiagnosed heart conditions are preventable. We can end them. But we need people prepared to act in an emergency and our children evaluated to discover these life-threatening conditions.” Because I have been given much, I too must give;Because of thy great bounty Lord, each day I live; (Grace Noll Crowell) Because we were screened and it saved our lives, we want all children to have the heart screenings they need.Because we had each other to share the day-to-day dealing with our conditions with, we want others to be able to connect with fellow heartcharged warriors and know patient-to-patient what this life means.Because we have grown with gratitude, we want to express it so others know it exists.Because our hearts still quiver, we want others to know we walk on without surety.Because there are still sorrows in the world, we want people to feel our tears.Because our souls still find joy, we want others to smile loudly.Join The JoltFollow us on Instagram @heartchargedStop preventable deaths. Prepare yourself and your community for a sudden cardiac emergency. Ensure heart conditions are found and treated.Share patient-to-patient information. Understand and embrace the HeartCharged Warrior life. ABOUT BETHANYWe of HeartCharged take great pride in our Instagram account, The Jolt @heartcharged. We consider it our home base because it is really where we started connecting with our international HeartCharged friends, and those that care for them and care about them. When you look at that account, we believe you will see a put-together page. The look is coordinated though the content is mixed. Gratitude and grace, facts and funnies, self-awareness and selfies are all apparent. Posts cover red days, blue days, happy days, what-is-happening days. You see the person, the patient, the giver, the receiver. And knowledge is unleashed so action can follow. And as is the page, so is the page's creator, the visionary who puts it all together, Bethany. Bethany will tell you herself that when she was told she needed a defibrillator implanted that she, of course, worried what it would look like. She was, and is, a dancer, earning her BFA in Dance Performance. She communicates with her body. She had already been diagnosed with HCM for 5 years when she passed out a time then two. And all of a sudden, her doctors told her one day that in 10 days she would have a defibrillator implanted.She will tell you herself about the days of doubt between the implanting and the unveiling. She spent weeks waiting for the bandages to come off to finally see who she had become. And when she saw, and it was no particularly small thing she saw especially in comparison to her small body, she looked on her new look and smiled. She did not see imperfection but strength and resiliency. And each day since, she has at her side that reminder of what is important and why it's important and why she needs to do what she does. Each piece of The Jolt page was picked with a purpose like Bethany's outfit on a Saturday night. Even the color scheme – blue, red, white, gold - has HeartCharged meanings. Beta-blocker blue, heart red, oxycodone white, winner's gold. The page is aptly named The Jolt because that is what a defibrillator sends to get someone's heart back in rhythm, and the page is ready to send a needed jolt to get someone's life back in rhythm. The first post up on The Jolt is perhaps Bethany's mission statement. It is a quote, “One day you will tell your story about how you overcame that battle you went through, and God will send you the exact people who need to hear that story.” And so on the page you will see her story. You will see her bulge in her bikini and know her battle. You will see her in a hospital gown and still grasp her glow. You will see her in leotards and lingerie, being charged or getting recharged. You may find that she flaunts her defibrillator, but she does so with a little girl's fears and a strong woman's faith. You may see her wonder and weep, strong and proud or down and out. But you will be able to see her. Her open-book approach to The Jolt page and her life makes her story just that easy to read and her battle just that easily known. Bethany has gone down a path which others are traveling and she offers to take their hand as they do. She saw herself, she accepted herself, she showed herself, she showed gratitude. She is happy to help them do the same. And now that you know her, you can walk with her as a friend. Email her at Bethany@getheartcharged.org ABOUT HANNAHIf you've seen our Instagram account, The Jolt @heartcharged, then you've already met Hannah. And you really are lucky to have met her because how many people can say they know somebody who has been shocked twice by their defibrillator while lip-syncing to Celine Dion's "All By Myself" on their high-school stage and gone on to finish the performance? (and not even mention it so she could get the pity vote and take 1st place instead of 2nd.) You've been delighted by her quirky sense of humor (sharing spaghetti a la “Lady and the Tramp” with her ‘heart' for her diagnosis anniversary). You've been treated to her dramatic prowess (was she actually the one with HCM in One Tree Hill?). You've enjoyed her editing skills, her directing talents, and her ability to really put together something out of almost nothing - all talents she is using now while studying film in college. (The Bionic Woman, what surgical instruments did they use for that implantation?). You've observed her outreach (gathering World Heart Day wishes from dozens of her HeartCharged friends around the world). You've seen her political passion (voting, campaigning, interning, trying to elect those who will support the HeartCharged cause even if it's while dancing on the streets in an apple costume). You see her putting to use the power of the spoken word (a Thespian and Spoken Word performer in high school, a tour guide, a podcast guest). You know she's done some death-defying acts (not dying in her sleep after going into sudden cardiac arrest, that's a good trick). You know she's a constant at the cardiologist (awww there she is with Dr. Avila). You know her condition is being managed by meds (and lots of them plus activity restrictions, meaning her approved sports are shuffleboard and darts). You know she has a genetic condition (same genes as her sister, aunt, mom - but they definitely look severely different in her). You know she comes at her mission to see all children receive heart screenings from a variety of angles (including standing in a pool to photograph her bionic sister in a bikini). You know she likes to dress up and put on wigs (you gotta love that, she's had to change roles plenty in life as well). And you will find that she is a person of intense faith (she spent 17 months serving a full-time ecclesiastical mission for The Church of Jesus Christ of Latter-day Saints in the honest-to-goodness best mission in the world, Utah Salt Lake City Temple Square). Meet Hannah. Love Hannah. Enjoy Hannah. We do!Email her at Hannah@getheartcharged.org LISTEN TO THE MUSIC OF PAUL CARDALLhttp://www.paulcardall.com
This week we will discuss HIV and Congenital Heart Defects. Seem like an unlikely pair? First we dive deep into the world of congenital heart defects, specifically focusing on the rare and life-altering condition known as Transposition of the Great Arteries (TGA). Our special guest, Derek Canas, has not only lived with this complex heart defect but has also experienced firsthand the consequences of a tainted blood transfusion in the 1970s, before routine screening for diseases in blood was standard practice. This led to a devastating HIV diagnosis, forever changing Derek's life. Join us as we hear Derek's incredible journey of perseverance, strength, and advocacy, while also learning about the challenges that came with living with TGA and managing HIV in a time of great stigma and limited medical knowledge. This is a story you don't want to miss, so stay tuned for a heartrending and enlightening conversation.
This week we sit down with our guest and new friend, Victoria Sides-Clark. We met Victoria this year at sun and fun and hit it off immediately when she shared she had navigated the special issuance pathway due to some heart surgeries she underwent as a child for congenital heart defects. Despite doctors giving her a clean bill of health, the FAA required further testing that some of her doctors didn't even feel comfortable ordering… listen now to here how Victoria got her SI. • IG:@victoria.sides & TT:@victoria.s.clark •SOCIAL LINKS- Instagram: https://Instagram.com/thepilotspandemic https://instagram.com/emneonicon https://Instagram.com/thefitaviatrix Link for aeromedical reform petition: https://www.change.org/apilotspandemic WEBSITE: https://msha.ke/thepilotspandemic/ SPONSORS: www.avi-foods.com @avi_foods_co Code:pilotspandemic --- Support this podcast: https://podcasters.spotify.com/pod/show/thepilotspandemic/support
Host Catherine Price and Dr. Emile Bacha, Chief of the Division of Cardiac, Thoracic, and Vascular Surgery at NewYork-Presbyterian/Columbia discuss the history of heart surgery, ventricular assist devices, and a new frontier in cardiac surgery: The Total Artificial Heart. Dr Bacha tells the groundbreaking story of successfully fitting a pediatric patient with a Total Artificial Heart. He explains the nuances of the procedure, and how a backpack-powered heart gave his pediatric patient another chance. The views shared on this podcast solely reflect the expertise and experience of our guests. For more information visit nyp.org/Advances
Dr. Timothy Nelson is the founder of HeartWorks, an organization that developed from the Todd & Karen Wanek Family Program for Hypoplastic Left Heart Syndrome founded at the Mayo Clinic in 2010. Tim's work specializes in the creation of stem cells to create heart muscle and hopefully cure pediatric congenital heart defects in the near future.The HeartWorks team has developed a platform that enables multiple cell-based clinical trials to be conducted simultaneously in collaboration with a consortium of world-class medical institutions. Check out this short video that chronicles the transformative technology of bioengineered cardiac tissue by converting a piece of skin from an individual to a beating heart muscle.Dr. Nelson earned his MD and his Doctor of Philosophy from the Medical College of Wisconsin, and he's been a physician at the Mayo Clinic in Rochester, MN since 2005In this episode, Dr. Nelson dives into the incredibly exciting technology that he and his team at HeartWorks are working on in an effort to create positive outcomes for those born with congenital heart defects. Statistics show that 1 in 100 children are born with a congenital heart defect and 1 in 4 of those born with a CHD will require a life-saving surgical procedure within their first year of life. Even with these interventions, 50% of children born with CHD won't make it to their fifth birthday. HeartWorks is working tirelessly to give children and adults with CHD a promising and fulfilling future. Dr. Nelson explains what exactly stem cells are, and how they are being used to have the potential to rebuild the heart. This is a fascinating episode, and I know you won't want to miss it.Quote from the episode: “We are on the tip of an iceberg and when we show this model can work, it is catalytic” - Dr. Tim Nelson***Upcoming Event **Want to do something fun and support the cutting-edge development of "self-grown" stem cells that will one day cure Congenital Heart Defects at the same time?Join us, along with Tim Nelson, MD/PhD, and former NFL star and Fox broadcast color analyst, Greg Olsen for a virtual dinner on February 23.Make some great food, drink some great wine (all provided with your registration), and learn about the future of medicine! Register here.Connect with Dr. Tim Nelson:Website: heartworksinc.orgPodcast: Cause2CureLinkedIn: Timothy NelsonFacebook: Timothy NelsonTo Connect with Mike: Website LinkedIn Instagram Twitter YouTube Coaching Get Mike's book: Owner Shift Please LIKE
Psychotherapist Tracy Livecchi, LCSW, joins Paul Cardall to discuss healing hearts and minds of people born with an illness that requires a life time of medical care. Both Tracy and Paul were born with complex congenital heart defects. Although congenital heart disease or CHD is the least funded of all major illnesses, CHD remains the leading cause of infant related deaths. However, because of advancements in medicine and technology millions of people have survived and adapt to what would be considered a normal life, although their lives have required a life-time of medical care and surgical procedures. They swap stories and go into detail about the miracle of life and how Tracy's parents were instrumental in working with doctors to secure her survival. Because of the lack of information for lifelong patients, Tracy and her colleague Liza Morton, PhD have written "Healing Hearts and Minds: A Holistic Approach to Coping Well With Congenital Heart Disease." ABOUT TRACY LIVECCHI, LCSWTracy writes on her website: In terms of my training, I received my Masters Degree in Social Work from Rutgers University. I have worked in a variety of settings as a private therapist, a clinical director, as well as a consultant for long-term care and hospital settings. I have been working as a psychotherapist in private practice since 1998, and currently provide psychotherapy to individual adults, adolescents, and couples in my Westport practice. I work from an eclectic theoretical orientation and provide supportive counseling while also utilizing cognitive, behavioral, psychodynamic and trauma informed, mindfulness approaches, when appropriate. I am the Mental Health Consultant for the Adult Congenital Heart Association's Peer Mentorship Program and speak nationwide on the importance of addressing the psychosocial effects of heart disease. I am passionate about mental health access for all and have a special interest in working with individuals and their families dealing with serious and chronic illness. I live in CT with my husband and two daughters. Website: https://tracylivecchi.com/GET THE BOOK: Healing Hearts & MindsACHA or ADULT CONGENITAL HEART DISEASE ASSOCIATION ABOUT THE HOST PAUL CARDALLhttp://www.paulcardall.comhttp://www.facebook.com/paulcardallmusichttp://www.youtube.com/cardallhttp://www.instagram.com/paulcardall LISTEN TO HIS MUSICAPPLE MUSIC - https://music.apple.com/us/artist/paul-cardall/4312819SPOTIFY - https://open.spotify.com/artist/7FQRbf8gbKw8KZQZAJWxH2AMAZON - Ask Alexa to play Peaceful Piano by Paul Cardall Paul Cardall is an artist who has given a new meaning to the phrase, a change of heart and how he used this radical change to take his music to an unexpected place. Despite being born with a potentially life-threatening heart defect Paul Cardall has become a world recognized pianist. He is even endorsed by Steinway & Sons as one of the finest pianist of our time. A Dove award winner for his Christmas album, Paul's recordings have debuted on 11 No. 1 Billboard charts along with 46 other chart debuts. His music has 25 million monthly listeners with more than 3 billion lifetime streams and is often categorized as Classical, Christian, and Holiday. Although most of albums are instrumental, Paul has songs that feature Grammy winning gospel legend CeCe Winans, Matt Hammitt (Sanctus Real), Kristin Chenoweth, Country duo Thompson Square, David Archuleta, Tyler Glenn (Neon Trees), Audrey Assad, Steven Sharp Nelson (The Piano Guys), and more. Paul has performed for audiences worldwide including the White House. Forbes, American Songwriter, Jesus Calling, Lifestyles Television, Mix Magazine, and countless other media outlets have share his remarkable journey of receiving a life changing heart transplant and using music as a tool to help God heal spiritual, mental, and emotional hearts.
Sean asks Priyanka about the worst advice she's ever received (and how she ended up in the middle of a gang fight). Olympian Shaun White is on the podcast to talk about his new lifestyle brand Whitespace and his congenital heart defects.
Caryn shares about her daughter Elaina developing ALCAPA, a congenital heart defect, and how they found out weeks after an uneventful pregnancy. Caryn will shed light on how she coped with Elaina's diagnosis and how she strongly advocated for her along the way. You will feel moved by Caryn's fierce love and commitment to her daughter [2:25] Takeaways on numbing cream from Katie [7:22] Caryn introduces her family [10:16] Experiencing a wide variety of symptoms [12:56] A visit to the emergency room [15:16] Diagnosis of ALCAPA and emergency surgery [18:40] Caryn was not able to go home to get belongings [19:14] Thoughts about getting a second opinions [20:56] Elaina quit eating after her first surgery [21:58] Advocating for a transfer to a different hospital [23:13] Elaina needed ventilation to recover from her first surgery [23:47] Getting devastating news that Elaina may not pull through a repeat surgery [25:00] She struggled with feeding difficulties [27:29] Honesty and Empathy [29:39] Crash course on the anatomy of the heart [33:13] The early diagnosis was a better outcome for Elaina [34:50] Caryn shares statistics about ALCAPA [35:49] PTSD symptoms arise while Elaina is hospitalized [36:57] Covid + Thanksgiving [39:22] Everyone has their own pain [40:37] Taking turns going home [42:15] How she turned her own worry into company [44:33] Why she wrote My Scar is Beautiful [46:39] What Elaina has taught Caryn [47:40] Heartfelt words of encouragement from one medical parent to another Connect with Caryn Instagram Facebook Website Sleep Tight Tonight Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. Parents, download our free parent starter kit. When you download our starter kit, you'll learn how to: Give medicine to your child without it becoming a wrestling match Prepare your child (and yourself) for a shot so they can feel less anxious Create and use a coping plan for any medical appointment or procedure The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing. Child life specialists, get affordable PDUs on-demand here. Shop for your CLOC gear here. Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.
The Creative Pivot - Actionable Inspiration for Starting a Business
Amy M. Le is a Vietnam War survivor and CHD warrior. She was born in Vietnam nine months before the fall of Saigon and immigrated to the United States in 1980 at the age of five with her mother and cousin. Her family was among the hundreds of thousands of boat people who fled Vietnam after the Vietnam War. They were sponsored to Seattle, WA and made a life for themselves in the Pacific Northwest. Amy graduated from Western Washington University with a degree inSociology and worked in the technology and telecommunications sector for twenty years. After her mother's death in February 2017, Amy left her corporate career to write her debut novel SNOW IN VIETNAM as a tribute to her mother's heroic decision to flee their homeland. Her Snow trilogy are historical and women's fiction novels based on her family's life and are available through independent bookstores and online retailers. Today, Amy is a full-time writer living in Oklahoma withher husband and son. She owns Quill Hawk Publishing and helps emerging authors indie-publish their work. She is also co-founder of The Heart Community Collection, a resource for the Congenital Heart Defect community.Her latest writing project was as one of the authors in the book, Asian Women Trailblazers Who Boss Up book, which profiles 16 Asian women who have broken the bamboo ceiling to blaze a trail for themselves. Sales of the paperback support two nonprofits whose mission is to preserve Asian history and amplify AAPI voices: The Banh Mi Chronicles and Vietnamese Boat People podcasts.The book can be purchased from Quill Hawk's website: www.quillhawkpublishing.comhttps://www.facebook.com/quillhawkpublishing/https://www.instagram.com/quillhawkpublishing/https://www.linkedin.com/in/amymle/Have you hit midlife or the empty nest years & thought, "well, what's next?" The Creative Pivot Coaching is for women between the ages of 40 - 65 who are ready to reinvent their midlife years. This is your time, it is never too late. Visit TheCreativePivot.com to learn more about how you can take those business and career ideas & make them a reality.IG: @thecreativepivot...
This week Amanda "Bertie" Bone shares her story being born with a congenital heart defect. We talk about her long journey through multiple open-heart surgeries, the challenges she faced deciding to become a mother, and what the technical definition of living is, since she has a machine that tells her heart when to beat, and how she was a guinea pig of sorts, and one of the first few people with a congenital heart defect to live into her 40s. Connect with Bertie: Instagram: https://www.instagram.com/bertiebigtime/ Please subscribe to the show, leave a review and follow along with the show on our other social media accounts: Website: https://www.EmbracingDeathPodcast.com/ Instagram: https://www.instagram.com/embracingdeathpodcast/ Host Julia Sheehan on Instagram: https://www.instagram.com/JuliaSheehan/ WE WANT TO HEAR YOUR STORY! If you or someone who know has a unique experience relating to death and dying and would be interested in sharing your story, please send an email to EmbracingDeathPodcast@gmail.com Rights to music purchased from https://www.soundstripe.com Episode segments Edit audio
Kristyn is joined by her loving husband and proud father of Luke and Ozzie, Mr. Kevin Newbern. It is incredibly rare to see or hear the father's perspective on life as a rare disease parent. Kevin shares his story, thoughts, and feelings on life as a Heart Dad. As they explain throughout this episode, becoming a parent to a child with a life-threatening health condition transforms you, and that transformation isn't always easy. It is full of fear, sadness, discomfort, and uncertainty - all of which are rooted in the profound love for your child. It's that same love that helps us to persevere on.
A complex open heart surgery is an undertaking full of inherent risks, during which many things hang in the balance. But, what if some of that unforeseen risk could be mitigated? What if the surgeon could hold your heart in their hands, study every detail, visualize every structure, even practice their operation on your heart before they ever made an actual cut, or even entered the operating room? What if?Recent state-of-the-art developments in 3D imaging and 3D printing have been making this a reality in many hospitals, and have been changing the world of pediatric medicine - especially for children with congenital heart disease.From realistic, patient-specific heart models used in surgery planning and patient education, to medical devices specific to the smallest babies - this incredibly flexible and affordable technology has the potential to innovate care for many of the smallest patients and their families. At the same time, like many emerging technologies, the laws and regulations that govern 3D printing in the medical space have been outpaced by the speed of innovation. Dr. Justin Ryan of the Helen & Will Webster Foundation 3D Innovation Lab at Rady Children's Hospital, in San Diego, CA says that sometimes this phenomenon makes working in this field feel a little bit like the "Wild West." However, he and others are actively helping to bring guidelines up to speed in order to make this technology as safe as it can be, while also leveraging that same flexibility in order to maximize his creativity in finding solutions for the hospital's patients. When it comes to that creativity, Dr. Ryan also draws upon his background as a classically trained artist, and surprisingly, he sees many similarities between his work as a biomedical engineer and the artistic process. Join me as we talk with the team from the 3D Innovation Print Lab, and explore this exciting and rapidly growing technology and its increasingly significant impact on the world of medicine.EPISODE GUESTSDr. Justin Ryan – Dr. Ryan is a research scientist and Director of the Helen & Will Webster Foundation 3D Innovations Lab at Rady Children's Hospital in San Diego, CA. With a background both in art and biomedical engineering, Dr. Ryan brings a unique skill set to his work with the 3D Innovations Lab.Dr. Sanjeet Hegde - Dr. Hegde is a pediatric cardiologist, research scientist, and the Director of Research at the Heart Institute at Rady Children's Hospital in San Diego, CA. He was a founding member of the 3D Innovations Lab, and helped pioneer Rady Children's Hospital's first 3D printing program.Kathryn Matthews - Kathryn is a parent of a child with complex congenital heart disease (CHD), and she is an active CHD advocate through her work and leadership with a family advisory council at her local children's hospital. Her advocacy, and courage to ask her medical team for what she thought her child needed, were a major catalyst in the integration of 3D printing into the medical care at Rady Children's Hospital.SUPPORTPlease consider supporting the important and innovative work of the Helen & Will Webster Foundation 3D Innovations Lab - you can find more information about how to do that HERE.*Episode Note - since initially producing this episode, the roles/titles of both Dr. Ryan and Dr. Hegde have changed. As a result, there is some discrepancy between their guest bios and how they are introduced in the episode. The titles included on this page are the most current.Also, the audio clip at 1:46 is Frank Muller performing the opening lines from "A Tale of Two Cities" by Charles Dickens.
Looking for more information on this topic? Check out the Cyanotic Congenital Heart Defects: Foundations and Frameworks brick. If you enjoyed this episode, we'd love for you to leave a review on Apple Podcasts. It helps with our visibility, and the more med students (or future med students) listen to the podcast, the more we can provide to the future physicians of the world. Follow USMLE-Rx at: Facebook: www.facebook.com/usmlerx Blog: www.firstaidteam.com Twitter: https://twitter.com/firstaidteam Instagram: https://www.instagram.com/firstaidteam/ YouTube: www.youtube.com/USMLERX Learn how you can access over 150 of our bricks for FREE: https://usmlerx.wpengine.com/free-bricks/ from our Musculoskeletal, Skin, and Connective Tissue collection, which is available for free. Learn more about Rx Bricks by signing up for a free USMLE-Rx account: www.usmle-rx.com You will get 5 days of full access to our Rx360+ program, including nearly 800 Rx Bricks. After the 5-day period, you will still be able to access over 150 free bricks, including the entire collections for General Microbiology and Cellular and Molecular Biology.
Pediatric therapists become lifelines in the lives of parents and caregivers, teaching them how to empower their children with disabilities. If you are someone who has had the experience of interacting with an early childhood therapist, you likely already know just how special these people are. Today's episode will remind you of the hard work these professionals have signed up for.Transcription and Merch can be found at www.atypicaltruth.orgInto and Outro Music by AmiinaEpisode Cover Art by Eric McJilton
Once again, Nichole Rosenberger has joined Kristyn and Erica to discuss everything from finding solace in the connections we have made with other rare disease families, the change in our perspective regarding our identity as parents of children with disabilities, the burden that mothers feel with the societal pressure of having a "healthy baby," our experiences concealing a second pregnancy, and the challenging decisions we came to when each learned that we were carriers of a life-threatening genetic disease. Finally, Kristyn and Nichole share their thoughts on how they one day plan to explain these decisions to their children. This episode is the finale of this 3 part series which has centered around the subject of IVF and Preimplantation Genetic Testing (or PGT).Into and Outro Music by AmiinaEpisode Cover Art by Eric McJilton
Looking for more information on this topic? Check out the Acyanotic Congenital Heart Defects: Foundations and Frameworks brick. If you enjoyed this episode, we'd love for you to leave a review on Apple Podcasts. It helps with our visibility, and the more med students (or future med students) listen to the podcast, the more we can provide to the future physicians of the world. Follow USMLE-Rx at: Facebook: www.facebook.com/usmlerx Blog: www.firstaidteam.com Twitter: https://twitter.com/firstaidteam Instagram: https://www.instagram.com/firstaidteam/ YouTube: www.youtube.com/USMLERX Learn how you can access over 150 of our bricks for FREE: https://usmlerx.wpengine.com/free-bricks/ from our Musculoskeletal, Skin, and Connective Tissue collection, which is available for free. Learn more about Rx Bricks by signing up for a free USMLE-Rx account: www.usmle-rx.com You will get 5 days of full access to our Rx360+ program, including nearly 800 Rx Bricks. After the 5-day period, you will still be able to access over 150 free bricks, including the entire collections for General Microbiology and Cellular and Molecular Biology.
Reflecting on last week's episode with Katie Palmer, in this Afterthoughts Episode, Kristyn and Erica spent an evening discussing the power of connecting through hearing a person's story, the lack of disability representation in our society, and how certain privileges influence all these themes - even in the rare disease community. Transcription and Merch can be found at www.atypicaltruth.orgInto and Outro Music by AmiinaEpisode Cover Art by Eric McJilton
© 2020-2025 Ivy Podcast Discovery LLC
