Utah mothers part of clinical trial to try surgery on fetuses with spina bifida

From The Deseret News in Utah:

SALT LAKE CITY — A groundbreaking nine-year study is giving hope to families with babies diagnosed with spina bifida, including a Utah family that credits the Management of Myelomeningocele Study or "Mom Study" for giving their son a better life.

Jessica Thomas was 15 weeks pregnant when doctors said her baby had spina bifida. “I think everyone wants to hear their child is going to be perfect,” she said, “so we were really shook up. It was a hard time.”

Spina bifida is one of the most common birth defects in the United States, affecting about 1,500 babies each year, according to the March of Dimes. The most severe form of spina bifida is myelomeningocele, a birth defect in which the lower backbone and spinal canal do not close before birth.

But with the heartache came hope in the form of a new clinical trial where doctors researched the pros and cons of operating on babies in the womb, believing medical abnormalities might be more easily fixed while a fetus is still developing. It was a procedure that came with huge risk. But after weeks of thought and prayer, the Thomas family applied.

“This was the only sense of hope I had to give him the best life possible, that he could have,” Thomas explained.

They were selected to be part of the prenatal group — one of 80 mothers who would receive the corrective operation before birth.

"They cut you from hip to hip, and you can imagine having a major surgery, cut twice and have a baby move around and kick,” she recalled. “I was in crazy amounts of pain for a long, long time."

But it proved to be a sweet sacrifice when, at only 1-week-old, an MRI showed little Tyson's brain malformation, which was a symptom of his spina bifida, was completely reversed.

“We just felt so blessed, and every day we are grateful,” she said.

Dr. Michael Varner, with the University of Utah Department of Obstetrics and Gynecology, said the surgery is a step in the right direction. But while the results are encouraging, the procedure is far from perfect.

"The supporters will say twice as many babies are able to walk after the procedures to those who had it repaired after birth,” he explained. “The opponents will say still 60 percent of those babies can't walk and there are some substantial risks to mother."

And though the Thomases don't know exactly what the future will hold, they are celebrating the small things, like their 23-month-old's first steps and his first words.

The Thomases were one of two Utah families who participated in the study. And interesting to note: The results of the study were so positive, it was stopped early so all babies with this defect might have the same chance Tyson did.