ORLANDO, Fla. – When Courtney Anderson and her family went in for a routine ultrasound to find out the gender of their baby, they anticipated happiness — not the profound news they received.
Doctors informed them that their son, whom they later named Phoenix, had spina bifida. This rare congenital malformation affects the spine and can compromise brain development, leading to lifelong challenges.
“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 anomaly impacting the spine and, unfortunately, can hinder brain development. Most children born with spina bifida face lifelong effects, explained Dr. Samer Elbabaa, Pediatric Neurosurgeon at Winnie Palmer and Arnold Palmer Hospital.
It is often identifiable between 19 and 21 weeks of pregnancy through a detailed anatomical ultrasound, noted Dr. Cole Greves, Director of Complex Fetal Care at Winnie Palmer and Arnold Palmer Hospital.
For Phoenix, the ultrasound detected an abnormality in his brain — specifically, the absence of his cerebellum — which led to further tests confirming the spinal defect.
The treatment involved a high-risk in utero open fetal surgery while Phoenix was still in the womb. Surgeons operated simultaneously on mother and baby to fix the spinal defect, a procedure that can lessen 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.”
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