Hospital unit celebrates 1,000th patient

Audrey Rose, born healthy May 28, had fetal surgeryin April for spina bifida.
Audrey Rose, born healthy May 28, had fetal surgeryin April for spina bifida.

At Children's, treating birth defects in the womb

Posted: June 16, 2013

Serenely unaware of her star status, Audrey Rose Oberio nestled in the crook of her father's arm before going home last week from Children's Hospital of Philadelphia.

Months earlier, surgeons had closed a hole in her spine, a defect called spina bifida. With her delivery May 28, the hospital celebrated the arrival of its 1,000th fetal-surgery patient - and the power of diagnosing and treating birth defects in the womb.

"When you hit a milestone like this, you tend to be reflective," said Scott Adzick, the pioneering surgeon who in 1995 established Children's Center for Fetal Diagnosis and Treatment. "I'm very proud of our team. And it's very rewarding to take an idea decades ago" and carefully, slowly prove it works.

Fetal surgery, which involves opening the uterus, treating the fetus, and then reclosing the womb, is risky for both mother and child. It remains relatively rare - about 4,000 surgeries worldwide over the last 30 years - and limited to highly specialized centers.

But for selected fetuses, intervening as early as possible - say, to remove a tumor, repair a heart defect, or divert fluid around a blockage - is worth the risks. It can spare them from lifelong organ damage, disability, or death.

The spina bifida surgery is particularly complex. Children's was the first to perform it successfully, in 1998, and is still one of only nine medical centers that offer it in the United States.

Jackie and Gideon Oberio of Essex, Md., were advised by specialists at several other hospitals to terminate the pregnancy after an ultrasound at 19 weeks showed that Audrey had myelomeningocele, the most severe form of spina bifida. As her spinal cord bulged through the hole in her spine, she was likely to develop paralysis below the waist, possibly brain damage, and other complications.

"Then we came here, and they gave us hope," Jackie said.

"They weren't pushing us to have the surgery," her husband said. "They just explained the options and made sure we knew it was our choice."

Audrey was born five weeks premature, but the only obvious sign of her spina bifida was a scar on her back. She has no hydrocephalus (the dangerous fluid buildup around the brain that the defect commonly causes), and her leg function appears good.

"She kicks like crazy when we change her diaper," her mother said. "And she screams when the needle is put in her foot. She definitely has feeling there."

Adzick looks forward to seeing her progress at the center's annual reunion.

"What I really love the most," he said, "is taking care of the patients. Every Monday, we see about 40 families and kids. It's wonderful shepherding families through the process. They're uniformly grateful, and the benefit is clear."

Contact Marie McCullough at 215-854-2720 or mmccullough@phillynews.com.

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