Erika couldn’t shake the feeling that something wasn’t right with the baby she was carrying, her second child. Although her 20-week ultrasound showed nothing wrong, Erika asked for another test. The results shocked her and her husband, Reggie: their child would be born with spina bifida
. A common birth defect affecting one in 1,000 children in the U.S. annually, babies with severe spina bifida are born with holes in their lower backs, leaving the spinal cord and central nervous system exposed.
Erika’s obstetrician gave her a pamphlet about spina bifida, and what she read was unsettling. “It was a terrifying diagnosis -- I saw it only in black-and-white terms, and I was so scared.”
Fortunately, the technician who performed Erika’s second ultrasound knew a neurosurgeon at Children’s, where more children with spina bifida are cared for than at any other hospital in the U.S., and recommended that she consult with him.
“We wanted to know things like what the life expectancy is for a child with spina bifida and what kind of quality of life could they expect,” she says. “The doctor was very kind and made the diagnosis more understandable. By the time Aaron was born, we were ready.”
In his first year, Aaron underwent several procedures, including the placement of a shunt in his brain to control the build up of cerebrospinal fluid that occurs in the vast majority of children with spina bifida. Now 10, Aaron has also undergone procedures for urological and bowel problems. Most recently he has undergone two orthopaedic surgeries on his legs.
But despite all the challenges, energetic, outgoing Aaron is a busy young man who enjoys participating in Cub Scouts, plays wheelchair basketball and is thriving in school. “He’s a happy child, and he’s blessed with a positive outlook on life,” says Erika.
This article was last edited in February 2009.