Connection and Care beyond the Diagnosis

Nine-year old Johnny has a knack for making people laugh. He loves singing and wheelchair basketball. His positive outlook on life reflects the care he gets from his family — which includes adoring providers at Children’s National Hospital.

His mom, Katherine, found out he had spina bifida when she was 20 weeks pregnant. “We met with the fetal medicine team, which in our case included a radiologist, a genetic counselor, a neurologist and a neurosurgeon,” she recalls. “It was a scary time, but after spending a day at Children’s National, I knew we were getting top-notch medical care.”

Genetic Counselor Meg Menzel introduced Katherine to other families who had navigated spina bifida. “We met a family who we are still very close to,” Katherine says. “It made a big difference to see how there was much more to their life — and their son’s life — than spina bifida.”

Just after birth, Johnny had life-saving surgery to close his spine. He stayed in our neonatal intensive care unit for two weeks and had another critical surgery to insert a shunt to keep his brain from swelling. He has had four more surgeries since then, including to fix his bilateral club feet and reconstruct his urinary tract. At 5, Johnny convinced his anesthesiologist to play one of his favorite songs on his way into the operating. “He was anxious,” Katherine says, “they helped him feel better.”

Johnny’s family now mentors other families new to the diagnosis. “When parents connect with an adorable kid like Johnny and see the love his family has for him, it gives them confidence about their future and the care their child will receive at Children’s National,” Katherine says. “Johnny is a super-happy guy who loves being with his family as a result of that care.”