THIBODAUX, La. — Kolby Boudreaux’s legs are supporting his weight. At 10 months old, he’s “army crawling” and pulling himself up on things. It may seem trivial, but his beautiful normality is due to surgery 12 weeks before he was born.
Kaci Boudreaux, of Thibodaux, learned during a routine ultrasound that her son had the most serious form of spina bifida — an opening in the spine that exposed the spinal cord.
Doctors at the Terrebonne General Medical Center Outreach Clinic referred her and her husband, Anthony, to Ochsner Medical Center’s maternal fetal medicine team to learn about their options with myelominingocele, which leaves nerves exposed and vulnerable to injury even from the amniotic fluid surrounding an unborn baby.
“At first, all we could think about was what was the worst outcomes. It was so scary,” Boudreaux said.
One possibility was having their baby become the first fetus at Ochsner to undergo the surgery pioneered in 1997 at Vanderbilt University Medical Center in Nashville, Tenn., and offered since late 2011 at Texas Children’s Hospital in Houston.
Myelomeningocele affects about 1 in every 1,000 babies born in the U.S. It can lead to hydrocephalus, a buildup of spinal fluid in the brain that can cause neurological disabilities, problems moving the legs, sensation impairment and bladder and bowel issues for the rest of the child’s life.
Boudreaux said the thought of what could become of her child weighed heavy. She was nervous about being Ochsner’s first.
“I thought how is that even possible? How can you do that?” Boudreaux said.
Her options were limited and no action was a great risk to the child. She read about others elsewhere who had the surgery and even watched a video of the procedure. All options were on the table. Even pregnancy termination was mentioned.
“I’m not for that at all,” Boudreaux said. One particular visit to the hospital for an ultrasound sealed the decision, she said.
“I could feel him kicking. He was very active. At that point, I thought I had to help him. Everything else was out of the options at that point,” Boudreaux said.
During the delicate two-hour operation, Ochsner’s surgery team worked together to repair the hole in Kolby’s back. Boudreaux’s uterus was opened by the physicians. The fetus was lifted and held just slightly out of his mother’s womb while a pediatric neurosurgeon closed the opening in his spine.
After a plastic surgeon closed his skin incision, he was placed back into the uterus. At the time of surgery, Kolby weighed just more than a pound.
Boudreaux said the wait to see if the baby would be born healthy was equally arduous. When he was born on March 3, Colby weighed 4 pounds, 12 ounces.
He’s been doing so well that in the autumn, doctors reduced Kolby’s checkup requirements from every two weeks to every six months. Doctors have also been encouraged by the strength of his legs, Boudreaux said.
“The surgery has definitely changed my son’s outcomes,” she said. “The staff made it so easy on us.”
Boudreaux said it was important that the procedure was available in New Orleans, not requiring long, expensive trips.
Today, she is active on different spina bifida awareness groups and has even advised some of the six parents who have had the surgery since her at Ochsner.
Most people who see Kolby have no idea the baby had spina bifida.
“He is already trying to go,” Boudreaux said. “He sees his sister playing and he wants to run with her.”