Access for Special Kids
Dianne Terranova with son Alex
If the Terranova family’s life were a puzzle, the pieces were quite scattered in 2003. Dianne and Michael’s second son was born with DiGeorge syndrome in May of that year. After five months of countless surgeries for her infant, Mrs. Terranova was at a loss. “I was completely stressed out; my whole life had crumbled down on me,” she said.
In December 2003, the Terranova family brought their son Alex to the University of Maryland Medical Center and found hope through the Children's Hospital’s Access for Special Kids program (ASK). UMMC and the ASK program helped the Terranovas piece their son and their lives back together for less stressful, even pleasant picture—finally, a complete puzzle.
The Access for Special Kids program provides coordination among doctors for children with unique, challenging needs. The small, but strong team—a doctor, a social worker, two nurses and an administrative assistant—provides guidance and answers questions for parents like Alex’s. Mrs. Terranova, who also has DiGeorge syndrome, says that she can pick up the phone anytime and call one of her care coordinators so she can get the answers she needs.
“What I didn’t understand, they made me understand,” she said. Mrs. Terranova clarified: They didn’t simply show me how to use Alex’s feeing machine, they actually taught me. “Without ASK I wouldn’t have the knowledge to take care of my son,” she said.
A chronic illness and complex disease like DiGeorge syndrome presents a myriad of complications associated with the heart and the immune system. During early fetal development, a deletion occurs in the 22nd chromosome, compared to the duplication of the 21st chromosome for people with Down’s syndrome.
For Alex, his DiGeorge syndrome has created problems with his mouth, nose, lungs, heart and bowel. Mrs. Terranova insists that her son has had more surgeries than anyone else in their lifetime. Within two weeks of birth, Alex had undergone four surgeries. Alex’s congenital heart failure prompted heart surgery and at only five years old, he already has suffered from two seizures, has had half of his colon removed and has been fed through a tube in his stomach for several years.
After his first two months at UMMC, his parents noticed dramatic improvements in Alex. Throughout his treatment, Mrs. Terranova, in particular, has developed a strong relationship with the ASK programs care coordinators and calls them her “angels sent from heaven.” They have helped her select which care provider she should contact based on Alex’s symptoms at a given time. However, ASK staff insists that Mrs. Terranova knows what she is doing and she is the primary reason Alex is doing so well today.
Not only does the ASK program empower the Terranova family to make medical decisions during critical times but also answers simple, day-to-day questions for them. Today, Alex is attending kindergarten. While he still has many challenges, he is an active child who in many ways is like other kids. He is very sociable and not afraid of things, said his mother. He likes to play soccer and climb on the playground, although he needs to limit his physical activities until he has his next surgery.
Mrs. Terranova said that UMMC has provided her with the elite primary and specialty care she needs for her son. “I just hope that other parents who have critically ill children get the same kind of help I do,” she said. The Access for Special Kids program is unique in the state and distinguishes the University of Maryland Medical Center as a premier institution dedicated to providing the finest care to its patients. Anyone may call 410-328-6879 to refer a child with complex chronic health concerns to the program.
by Kaitlin Doody