As Christian Provenzano, who has cerebral palsy, moves into adulthood, his family prepares for a new health care reality.
By Christine Bush
Donna Provenzano of Children’s Specialized Hospital and the Panarese family attend Speak Now for Kids Family Advocacy Day.
The Panarese family conquered the struggles of finding the elusive answers to Christian's medical problems. Diagnosed with cerebral palsy, his grandparents, Nancy and Frank, navigated the eight-hour days of his various therapy sessions week after week, year after year. They advocated for Christian as he worked his way through elementary school and helped him enjoy so many of the activities a high school student wants to experience. Christian is now 20 years old, and the Panareses are in the midst of the difficult task of transitioning him from pediatric to adult care.
Nancy is also on the family faculty at Children's Specialized Hospital in Mountainside, New Jersey, where Christian has received care since he was 9 months old. In this role, she has helped parents for more than 15 years. "They found us on the benches," Nancy says. "We were a bunch of moms sitting on the benches at the hospital every day. Now we work on behalf of the hospital to be there for others. Sometimes it's getting a cup of coffee for a mom. Sometimes it's listening as they cry, and I can say, "I've been there, I've done that.'"
Knowing from experience
Christian cried every moment from birth. Since Nancy had four other children, she knew it wasn't normal. Despite repeated trips to the pediatrician, the doctor couldn't find anything wrong with Christian. Even though he passed the Apgar test at birth, and the pediatrician didn't raise concerns, Nancy's maternal instinct told her something wasn't right.
In addition to excessive crying, Christian choked and struggled to drink a bottle. Out of desperation, Nancy started searching the internet and took note of research about brain development describing how a baby uses only one side of the brain until they are 6 months old. At that age, she noticed Christian's left arm pulled up and he was dipping to the left side. "I was starting to feel nutty at his point," she says. "It was all piling up. He was tipped over—his choking and eating was worse. I emphatically told the doctor I had to get answers."
When he was 9 months old, the family found Martin Diamond, M.D., associate clinical professor, Department of Physical Medicine and Rehabilitation at Children's Specialized Hospital. Diamond ordered an MRI, which revealed an unexpected result: the right side of Christian's brain never developed.
"We were shocked," says Nancy. "Dr. Diamond took the picture down and said, "We're never going to look at that again. Now we're going to discuss how we're going to take care of Christian.'" His crying started to subside at around 2 years old, and Christian's progress defied what science said about brain function. Even without the right side of his brain, at 3 years old, he scored at an age-appropriate level on an IQ test.
Christian relies on a wheelchair and has limited use of his arms and hands. He started speaking at age 7, and by age 8, he wanted play video games. Speech is difficult, so Christian uses his mobile phone to text and stay connected with friends. He graduated high school and moved to a vocational technical school learning a mix of academics and life skills. "We're so proud of him," Nancy says. "He's taken graphic design classes and loves his cooking class. He's come such a long way."
Getting an early start
Nancy and Frank know at age 21 Christian needs to get care outside of Children's Specialized. Nancy started looking for new doctors when he turned 18. "Even finding a dentist is a lot harder than you might think. Nobody wants to take care of these kids," she says. Nancy finds strength from Christian whose non-stop crying has been replaced with non-stop smiling. "Even though life is tough, I never give up and I keep on going," Christian says. Nancy believes he makes them all tougher. "He went from a not very happy kid to the smiling boy that you would never think had a miserable day."