Heart Defect and Down Syndrome: Anthony’s Long Road Home

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When I first found out I was pregnant with our third child, I would joke that “this kiddo was along for the ride and I’m just going to strap him or her into a carrier and go.” Along with a prenatal diagnosis of Down syndrome, we knew Anthony would need open-heart surgery to repair an atrioventricular canal (AVC) heart defect within his first year. What we didn’t know is that Anthony would need to spend about 8 months in the Newborn/Infant Intensive Care Unit (N/IICU) at Children’s Hospital of Philadelphia (CHOP) before coming home to our family.

Anthony During Anthony’s time in the N/IICU, he had a successful heart repair and g-tube placement surgery – but not without a few hiccups along the way. In those hard months when Anthony was hospitalized at CHOP and I was juggling to care for his two siblings at home (they were 2 and 4 at the time), I spoke with many moms who had older children with Down syndrome. I remember thinking: We just have to make it to his third birthday. In my mind, that’s when all the big developmental things started to happen.

When Anthony came home from the N/IICU, we still had a long road ahead. With the help of the Trisomy 21 Program, Early Intervention therapists and a team of CHOP specialists, Anthony began to thrive and soon fit in seamlessly with his brother and sister. Anthony’s siblings soon became two of his favorite people in the whole world. He instantly lights up when they enter the room, and it just melts my heart.

As Anthony neared his third birthday, we began the transition to our county’s Intermediate Unit for all of Anthony’s therapies with a focus on getting him ready for school. We decided to send Anthony to the same preschool program his two older siblings attended, and we are so thankful we did. In just his first few months of preschool, Anthony has grown so much and gained so much independence. He can’t wait to start back again this fall.

Anthony and his siblings And just like that, we made it to Anthony’s big third birthday. And it’s true, all the big things are finally happening! Anthony is starting his second year of preschool and I can’t wait to see what  he learns next. We don’t know what new adventures and milestones the next three years will bring, but our family is excited to be along for the ride.

–Amy R., mom of Anthony, a patient of the Trisomy 21 Program and Cardiac Center at CHOP