Like mothers everywhere, Kallie Goudey often finds herself in awe of the miracle of her children. In the case of 6-year-old Emma, she watches her dance, sing, run and play T-ball, all with an exuberance that sometimes wears grownups out.
“So much energy—she’s the fireball in our house,” says Goudey, a 31-year-old teacher assistant.
This typical kid behavior is remarkable because Emma has spina bifida, meaning her spinal cord did not form properly, requiring surgery in the womb while Goudey was pregnant. Children with spina bifida often face developmental delays and mobility issues, but Emma is a thriving, active kindergartner.
“I’m still wowed at times,” Goudey says. “Is this real, is this happening for her?”
It would be hard to imagine back in 2018 when Goudey was pregnant with Emma and received life-changing news.
What is Spina Bifida?
Goudey went to her obstetrician when she was 21 weeks pregnant for an anatomy scan. The doctor said her baby appeared to have spina bifida but that she would need to see a maternal-fetal medicine specialist to know the severity. She and her husband Kyle were understandably upset—even more so when they started googling the condition.
Spina bifida is a birth defect that occurs when a baby’s spine forms with a hole or opening. There are several types of spina bifida, but in the most severe type, called myelomeningocele, the spinal cord and nerves bulge out in a sac through this opening, usually in the baby’s lower back. This can lead to nerve damage and problems with sensation, movement and bodily functions, and it can affect the development of the brain. Doctors don’t know exactly what causes spina bifida; it’s likely a combination of genetics and environmental factors.
Goudey was referred to UNC Health maternal-fetal medicine doctor William Goodnight, MD, and traveled an hour and a half from her home in Randleman, North Carolina, to see him when she was 23 weeks pregnant.
Talking with Dr. Goodnight provided a great deal of relief, Goudey says.
“He gave us all the optimism in the world,” she says. “He told us that these kids can do amazing things.”
He also told her that she and her baby could undergo fetal surgery to close the opening. At 25 weeks and one day, Goudey was in the operating room.
Fetal Surgery to Treat Spina Bifida
Babies like Emma with myelomeningocele often have what’s called a type 2 Chiari malformation, in which part of the brain begins to descend into the spinal cord, interrupting the flow of cerebrospinal fluid, which protects the brain. This can result in a buildup of fluid on the brain, or hydrocephalus, and damage to the developing brain.
In about one-third of cases, fetal surgery resolves the Chiari malformation, greatly reducing the risk of hydrocephalus, Dr. Goodnight says. Children who develop hydrocephalus are often treated with a shunt, or tube, implanted in their brain to drain the fluid. Traditional surgery after birth does not correct the Chiari malformation.
“With fetal surgery, we have a much better chance of not having hydrocephalus or needing a shunt, and it’s more likely the babies will have development on par with their peers, talk and learn and go to school, and meet all their developmental milestones,” he says.
Children who have surgery in the womb are also more likely to walk independently or with simple braces rather than needing walkers or a wheelchair. The surgery is less likely to resolve issues with bladder or bowel function; children and adults with spina bifida often have to use diapers, catheters, planned trips to the bathroom and other strategies.
Undergoing Surgery While Pregnant
Goudey remembers being shocked when Dr. Goodnight recommended fetal surgery.
“I never even knew it was a thing,” she says. “I was an emotional wreck beforehand, but I knew we needed to do this.”
A team of specialists collaborate to perform fetal surgeries. First, the mother is put under general anesthesia. Then, surgeons make an incision in her abdomen and another in her uterus, usually about the size of the spina bifida lesion—4 to 6 centimeters, Dr. Goodnight says. A neurosurgeon comes in to close the opening in the baby’s spinal cord. Then, the mom’s uterus and abdomen are stitched back together.
Throughout the procedure, both mom and baby are closely monitored.
“It’s a complex operation with a lot of people involved,” Dr. Goodnight says.
A major risk is that the surgery on the uterus will make the mother’s body think that labor has begun, when it’s much too early in pregnancy to safely deliver the baby. Goudey stayed in the hospital four days for monitoring, and for the remainder of her pregnancy, she took medication every four to six hours to prevent contractions.
She was anxious to feel Emma move after surgery as a confirmation of sorts that she was OK. She had been a very active baby beforehand, and she didn’t make her mom wait long.
“I woke up to her beating me up from the inside,” kicking against the sutures, Goudey says. She likened it to recovering from a C-section, but the baby is still inside, moving around. “So that was pretty painful but reassuring.”
After surgery, Goudey was on bed rest, largely confined to her living room couch, though she would drive to school to pick up her older daughter, Brooklyn, who is now 14.
She had Nov. 12, 2018, circled on her calendar for a scheduled delivery. That day she would be 37 weeks pregnant, and the baby would be developed enough to be born.
Welcoming Emma and Watching Her Grow
Of course, babies come when they want to, and Emma was no exception. Goudey started having contractions at 36 weeks, 5 days, and Emma was born via C-section on Nov. 10, 2018, at 7 pounds, 1 ounce.
She looked healthy to her parents, and she was—she didn’t even require a stay in the neonatal intensive care unit, though NICU providers were on hand during the birth just in case.
Emma’s early years looked much like any other child’s, though she has had regular check-ins with specialists in neurology, urology and orthopedics. The fetal surgery reversed her Chiari malformation, and she never had hydrocephalus, any evidence of brain damage, or weakness in her legs or feet.
“She walked at 10 and a half months old and was running before she was 1,” Goudey says. “I think the fetal surgery had a lot to do with preventing any further nerve damage. Even today, if you don’t see the scar, you’d have no idea.”
Emma is social, sporty and confident. She’s also a big sister; her parents welcomed a boy, Dalton, in April.
“She’s obsessed with him,” Goudey says. “She would pack him up and take him to school if she could.”
Goudey’s latest pregnancy was considered high-risk, and she was very anxious until she got to her anatomy scan with Dr. Goodnight and learned Dalton’s spinal cord had formed normally.
She wants other parents of babies with spina bifida to know that there will be challenges but your baby’s future can still be bright. She recommends finding a support group, either in person or online.
“I wish I would have stayed off Google back then and instead found parents who have gone through it,” she says. “There’s a community of us, and it’s helpful to find it.”
If you have questions about pregnancy, talk to your doctor or find one near you.