Answers about Alex

Alex in cribMany couples experience difficulties conceiving a child, and Amy and Andrew Bellanca were among them. Finally, they decided to begin the adoption process. Shortly thereafter, they learned that Amy was pregnant.

Amy’s was a high-risk pregnancy due to pre-eclampsia, a condition caused by elevated blood pressure and other complications. Amy had to have an emergency C-section ten weeks before her due date. Their newborn son, Alex, was immediately taken to a local neonatal intensive care unit (NICU) at a local hospital.

Doctors in the NICU quickly recognized that something ‘wasn’t right with Alex’. “They said he was really floppy,” Amy reported. Despite the expertise of the hospital staff, no one was able to give Amy or her husband information about Alex’s exact condition.

The family was referred to Kennedy Krieger Institute’s NICU follow-up clinic, where Dr. Marilee Allen gave Amy and Andrew the information they needed. Alex was diagnosed with a condition called hypotonia – a complex disorder that can be triggered by the nervous system.

Amy admits that the news set her back. “It was a lot to take in.”

“Dr. Allen said ‘I know how this is going to go,’” Amy said. “She told us exactly what to expect. She was the first person who could sit us down and explain Alex’s condition and prognosis. We can see now that she nailed it.”

Little Alex immediately started physical, occupational, and speech therapy at the outpatient NICU follow-up clinic. Amy said that she, her husband, and the Kennedy Krieger team did everything they could to ensure that Alex would have the best possible outcome.

The therapies were exhausting for Alex at times, but Amy said that Ms. Meghan, his physical therapist, made it fun. As Alex grew, he rotated through different activities, including playing with toys, climbing stairs, and eventually riding a bike.

It was hard work, but Alex didn’t seem to mind,” Amy said. “In fact, the therapists became like an extended family.

During his treatments, the family decided to move to northern Pennsylvania to be closer to their own extended family. Alex’s grandmother drove him to Kennedy Krieger every week for a year after the move.

Then, they decided to look for care closer to home. Dr. Allen stepped in and actually found a local doctor who had trained at Kennedy Krieger. That doctor took over Alex’s case and oversaw his care from then on.

“Alex will continue to need therapy until he is 18,” Amy said.

Today, at age four, Alex is somewhat behind developmentally, but has learned to walk and talk. He attends a “reverse inclusion” preschool – a setting that incorporates a small group of typical children with a larger group of special needs children like Alex. Amy describes him as a happy-go-lucky child.

We are so grateful to Kennedy Krieger and all they did for our son,” she said. “How can you say ‘thank you’ enough to the people who taught your child to walk?

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