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CLEVELAND – Finding out your baby has a birth defect can be devastating.
Kimmie and Justin McCaw were looking for answers after their unborn son, Tyler, was diagnosed with spina bifida, a serious neurological defect where the spine doesn’t form properly, exposing the spinal cord, leading to nerve and possible brain damage.
“His cerebellum was showing signs of malformation,” said Justin McCaw. “They said he could lose function of his legs, his feet, he could develop club feet, he could lose function of his bowel, and his urine and all that and so, we were looking at a pretty severe case.”
Babies with spina bifida typically undergo surgery to cover the spinal cord a few days after birth, but some hospitals now operate before a baby is born, in utero, to reverse damage and allow the brain to form normally.
“There’s a risk to doing it before birth but if you take 100 children, most of them will have a significant benefit from doing it before birth,” said Darrell Cass, MD, director of fetal surgery at Cleveland Clinic’s Fetal Center.
After being turned away by another hospital, the McCaw family traveled 14 hours from Oklahoma to Cleveland Clinic. Four days later, at 26 weeks along, Kimmie and Tyler went into surgery.
“We keep the baby nicely floating in fluid inside the uterus but the back is exposed and we work on the back,” said Dr. Cass.
Doctors carefully put nerve and spinal cord elements back inside the spinal canal and use muscle and skin to cover them. Then, the uterus is closed.
“The cerebellum improved greatly and he said that the surgery was a success,” said Kimmie McCaw.
Kimmie was monitored carefully and eight weeks later, Tyler was born by C-section.
“We think now he will have the best long term outcome of avoiding any risk of hydrocephalus and having the best motor performance of his legs and the best ability to walk independently,” said Dr. Cass.
It’s been more than a year, and the McCaw family recently celebrated Tyler’s first birthday. They say he’s making amazing progress.
“Follow that road less traveled and always pray and don’t give up hope,” said Justin McCaw.
Doctors say Tyler is expected to walk in one to two years.
In the meantime, he continues seeing spina bifida specialists to ensure his legs, bowels and urinary habits continue to develop and function normally.