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When Sara Bonneau's newborn son was diagnosed with Tetralogy of Fallot, she had no roadmap for the journey ahead. In this raw and powerful conversation, she takes us through the evolution of parenting a child with a serious heart defect—from the terrifying early days without social media support groups to watching her son become a competitive high school basketball player.

Sara's candor about her mental health struggles resonates deeply as she shares her delayed PTSD diagnosis following her son's first surgery. "I experienced a lot of anxiety after Ryan was born. I remember being so scared he was going to die if I let him out of my sight," she reveals, encouraging other heart parents to seek help sooner than she did.

The conversation takes a powerful turn when Sara describes how tragedy became the catalyst for her unexpected advocacy work. After Sara discovered a 15-year-old basketball player in her son's rival team collapsed and died, she discovered there was no AED available that might have saved his life. Despite having no legal background, this special education teacher successfully campaigned for Rhode Island legislation requiring AEDs in all middle and high schools.

Her message to listeners facing their own struggles is beautifully simple: "Your voice matters. I was just a mom. I had a voice. I made a very significant change for student athletes and children in Rhode Island just by sharing my story and speaking from the heart." Sara's journey from terrified parent to legislative changemaker demonstrates how we can transform our deepest fears into purposeful action.

Whether you're a heart parent seeking connection, an advocate looking for inspiration, or someone navigating the healthcare system, Sara's story will remind you of the incredible power one determined voice can have. Subscribe now and join our community of families and professionals dedicated to improving lives in the congenital heart defect world.

Helpful Links:

Diane Pucci's episodes: 

The Miracle of Growing Up with a CHD: https://www.buzzsprout.com/62761/episodes/398967

Voices of Victory: Overcoming Congenital Heart Challenges: https://www.spreaker.com/episode/voices-of-victory-overcoming-congenital-heart-challenges--58745010

Discord Server Link: https://discord.gg/WZwQf7pPM8

CardioHUB 2025 link: https://www.cardiologyconferenceeurope.com/

HUG website link: https://www.heartsunitetheglobe.com

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