Raya's Story

Born more than six weeks early, Raya spent most of her first six months after birth in and out of the hospital, with tubes and medications and oxygen monitors all the time. Raya has Down syndrome, and like nearly half of children with Down syndrome, she also had a large hole in the wall between her heart chambers. In fact, it was more than a hole – an echocardiogram test showed there was very little separating the heart chambers at all. This condition is known as atrioventricular septal defect (AVSD).

Raya's mom, Mia, cried at night a lot during that time, worried about what her baby girl's life would be like, or, with all her complications, if she'd even have a chance to have a life at all.

Finally, though, Raya grew strong enough for surgery to fix the hole in her heart. The family met Children's National Hospital cardiac surgeon Aybala Tongut, MD, an expert in the delicate, detailed surgery to close her AVSD.

On Raya's surgery day, Mia handed out bracelets to her family to wear so that no matter where they were, they could feel close to Raya. Dr. Tongut proudly wore hers and posed for a photo with it after surgery.

After surgery, Dr. Tongut continued to check in with the family throughout Raya's recovery. Mia says, "I know she didn’t have to come back to see us that often, but she did. She kept coming back to personally make sure we were all ok."

Since going home after surgery, Raya hasn't been back for a hospital stay. She is strong and healthy. Her hospital time was replaced with family time. Raya loves dancing and singing to music with her three big sisters and their three dogs. And, with the help of physical therapy, she recently completed a huge milestone — walking all on her own.

"She's a miracle," says Mia.