ORLANDO, Fla. – When Courtney Anderson and her family arrived for a routine ultrasound to learn the sex of their baby, they expected joy — not life-changing news.
Doctors told them their son, later named Phoenix, had spina bifida, a rare congenital malformation affecting the spine that can impair brain development and cause lifelong complications.
“We found it early, and we were lucky,” Anderson said, recalling the shock of the diagnosis and the relief of learning about new surgical options.
Spina bifida is a congenital malformations affecting the spine and unfortunately, it can impact the development of the brain. Most kids who have spina bifida will have an impact for the rest of their lives, said Dr. Samer Elbabaa, Pediatric Neurosurgeon at Winnie Palmer and Arnold Palmer Hospital.
It can often be detected between 19 and 21 weeks of pregnancy through a detailed anatomical ultrasound scan, said Dr. Cole Greves, Director of Complex Fetal Care at Winnie Palmer and Arnold Palmer Hospital.
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In Phoenix’s case, the ultrasound revealed an abnormality in the brain — specifically, that his cerebellum appeared absent — prompting further tests that confirmed the spinal defect.
The treatment involved a high-risk in utero open fetal surgery performed while Phoenix was still in the womb. Surgeons operated on both mother and baby at the same time to repair the spinal defect, a procedure that can reduce the severity of long-term complications.
“There are significant risks, including ruptured membranes, preterm labor, and the fact that we place an incision on the womb while the baby is still growing,” Dr. Greves said.
Even after the successful operation, Anderson carried Phoenix under careful monitoring, feeling him kick as the surgical incision healed.
Now, looking at Phoenix, Dr. Greves says one word comes to mind: optimism.
“So much of what we do is about giving families hope and opportunity,” he said. “That’s what we strive for — here in Central Florida and around the world.”