Boy gets treatment for rare bone condition at Nemours Children's Hospital in Delaware
Viana Kelly is relieved to roll into Nemours Children's Hospital in Wilmington, Delaware, with her 1-year-old baby, Koa.
"I walk in here every time not worried about his care," Kelly said.
Koa has osteogenesis imperfecta, also known as OI, a rare genetic brittle bone condition that is life-threatening.
OI is usually diagnosed before a baby is born, and parents are often given a devastating choice, Dr. Ricki Carroll at Nemours said.
"Their options were either to terminate the pregnancy or to focus on comfort when they were born until they died," Carroll said.
New research suggests it doesn't have to be that way.
"Almost every doctor I saw just gave me the same answer, to get rid of him, that he wouldn't live," Kelly said.
Koa defied the odds, and his mom quickly had him transferred to Nemours, which specializes in treating the condition.
"It was like taking a breath of fresh air," Kelly said.
A small new study from Nemours says fatal OI is difficult to accurately diagnose before a baby is born, and that with the right kind of care, it's not always deadly.
"Many of these babies did survive. And not just survive, they are thriving. They're doing phenomenally," Carroll said.
Carroll said with bone-strengthening medications and specialized equipment, babies like Koa can improve.
"We do everything. Koa goes to museums, we go to the zoo, we go to mommy and me classes," Kelly said.
Doctors say it's unclear what the future will look like for babies who survive OI, but the new research shows there is some hope.
Koa's fragile condition is challenging, but Kelly said it's worth everything to her.
"That's my heart outside of my body. That's my soul outside of my body," she said. "He teaches me every day how to be strong."
