Voices of Strength: Tyler Šajdák's HLHS Journey and Advocacy in the CHD Community

Tyler Šajdák wasn't supposed to grow up. Born with hypoplastic left heart syndrome in 1993, he was part of a generation receiving experimental surgeries with uncertain outcomes. Today, at 31, he works as an academic advisor, pursues a master's degree, and serves as a powerful advocate for the adult congenital heart defect community."I've been told by people that just by looking at me, they wouldn't know that I had a heart defect," Tyler shares during our conversation. This invisibility is both a blessing and a challenge for the growing population of adult CHD survivors who must navigate a healthcare system still learning how to treat them.Tyler's involvement with Single Ventricle One (SV1) - the recently unified organization combining pre-Fontan and post-Fontan networks - puts him at the forefront of efforts to improve care for adults with complex heart conditions. "I think my role is making sure the other planners are thinking of how the adults can be served as well," he explains, describing how medical conferences historically focused primarily on pediatric care.Our conversation delves into deeply personal territory as Tyler recounts his experience with vocal cord paralysis following surgery and the profound moment when his grandfather, after suffering a stroke, heard Tyler speak with a full voice for the first time shortly before passing away. We also discuss his recent transplant evaluation, where doctors delivered some surprising news.For anyone living with CHD or caring for someone with a heart defect, Tyler's story offers both practical guidance and emotional resonance. From balancing health concerns with career ambitions, to finding community with others who share similar experiences, he demonstrates how adults with congenital heart conditions can thrive while helping shape a medical field still discovering what lifelong care looks like for this first generation of survivors.Connect with the SV1 community through their upcoming patient day in Indianapolis this October - whether you're a patient seeking connection, a parent looking toward your child's future, or a medical professional committed to advancing care standards for this unique population.Helpful Links mentioned during this episode:Boston Children's Hospital Single Ventricle Family Day at the New England Aquarium: https://ow.ly/omax50WAN8AKristi Pena’s episode about Barth Syndrome: https://www.buzzsprout.com/62761/episodes/398916Link to register for SV-One Fall 2025: https://www.svone.org/events/fall-2025-learning-sessionLink to "The Heart of a Heart Warrior" book series on Baby Hearts Press. Tyler's essay is in Volume One: Survival: https://babyheartspress.myshopify.com/products/the-heart-of-a-heart-warrior-volume-1Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.