Serena's Story

(photo courtesy of Shannon Danis Photography)

by Stephanie Rastelli

Editor's Note: Stephanie Rastelli's daughter Serena was diagnosed with a heart condition before she was born. She had her first open-heart surgery at three days old. At age nine and a half, she recently celebrated her success by participating in a fashion show as part of the American Heart Association's "Little Hearts. Big Love." fundraiser.

On September 6, 2001 I went in for a routine ultrasound for my 20 week appointment. At this appointment the ultrasound technician detected something wrong with my baby's heart. I was then referred to the PDC for a level 2 ultrasound, which I had the very next day. That day I was told my daughter had a condition called hypoplastic right heart syndrome.

That evening I received a phone call from Dr. Lloyd Feit. He informed me he was the pediatric cardiologist that my ultrasound tape was sent to, and he wanted to reassure me that he had reviewed it and would make sure I was scheduled in the clinic as soon as possible. This all while he was at a family outing. I was able to breathe a small sigh of relief knowing that this man, whom I had never met, took the time out of his evening to call me and speak with me a little to help calm my nerves. A few days later I arrived at the pediatric heart clinic at Hasbro Children's Hospital to be seen by Dr. Feit. The diagnosis was confirmed and the future expectations were explained to me.

"Getting the chance to be an advocate for all the kids with heart defects is something she loves to do." - Stephanie Rastelli

Fast forward five months to January 2002 when my daughter was born. Due to the complexity of her heart condition she was born at Women & Infants' Hospital and then transferred to Children's Hospital Boston. She had her first open heart surgery at just three days old. After two weeks in the hospital we received the wonderful news that we could go home. In the years since she has gone back at three months old and 21 months old for the second and third stage of her open heart surgeries. At three and a half years old she had her last procedure, which was a catheterization.

Serena has been seen for the past nine and a half years, for all of her follow-up and yearly check ups, at the pediatric heart clinic in Lifespan's Coro center. The staff, and of course Dr. Feit, have become part of our family. From Dora to Deb to the med students who are learning and will be the future caretakers of our kids there are no words to say thank you enough to them.

When it came to being part of the Go Red Style Week Challenge, "Little Hearts. Big Love," my daughter was over the moon with excitement. She is a star in her own mind and being on the "big stage" and getting the chance to be an advocate for all the kids with heart defects is something she loves to do.