"Wounded Hearts Beat the Loudest" Sarah & Greyson Ouellette's Single Ventricle Story

Got a story idea for Bloodworks 101? Send us a text message Recently-four-year-old Greyson Ouellette wasn’t even born yet when his parents, Sarah and Brian, found out he had a heart defect. At her 20-week full anatomy scan, Sarah’s care team determined that the ventricle of Greyson’s heart was already significantly smaller than normal size, meaning that he would be born with Single Ventricle Disease (SVD), a rare congenital heart defect that affects just five out of every 100,000 newborns in America each year. Babies born with SVD require surgery immediately after birth, often one or more afterwards and, in some cases, need a heart transplant later in life. Today, Greyson has had two open-heart surgeries in his only four years of life but is doing well, playing with his older twin brothers and attending preschool. During all of Greyson’s treatments, procedures, and inpatient stays, Sarah promised herself that once Greyson was stable, she would find a way to families struggling with this rare disease. She believed not enough was being done to advance new treatments and improve outcomes for these kids, so awareness and support of SVD families became her mission. She started putting together care packages for families who’ve just found out their baby will be born with SVD, including supplies necessary for long hospital stays and a heartfelt letter of her own story. She raises funds for this project by selling “Team Greyson” merchandise online.  As one of Bloodworks tiniest patients, Greyson is a reminder that anyone, at any time, might need blood to live. That’s why donating blood is so important.   Support the show