NEW ORLEANS – Little Kolby Boudreaux is moving his legs and feet. While this is something most parents take for granted, for Kolby it’s remarkable. He underwent a life-changing surgery at Ochsner Medical Center in New Orleans to correct the myelomeningocele birth defect, the most serious form of spina bifida… 12 weeks before he was born. During a groundbreaking surgery, Ochsner Medical Center’s fetal surgery team of 18 physicians and nurses operated on the 23-week-old fetus while still in his mother’s uterus, a procedure that fewer than 10 hospitals in the United States are able to perform.
Myelomeningocele (MMC) is one of the most serious forms of spina bifida and affects approximately one in every 1000 babies born in the United States each year. MMC occurs when the spinal cord is exposed through an opening in the spine, leaving nerves exposed and vulnerable to injury from amniotic fluid. It can lead to hydrocephalus (a buildup of spinal fluid in the brain which can cause neurological disabilities), problems with movement of the lower limbs, sensation impairment and bladder and bowel issues for the rest of the child’s life.
Traditionally, surgeons wait to repair the defect until after a baby is born. But, the landmark 2011 Management of Myelomeningocele Study (MOMS) found that babies who received the surgery prenatally were half as likely to need a ventricular shunt (a plastic tube placed inside the brain to reduce pressure), twice as likely to walk independently at two years of age and had better motor function than those who had surgery after birth.
“When the fetus is just 12 to 14 weeks, we can detect the MMC malformation. As the pregnancy continues, we can see the nerve damage occurring,” said Clifton Moore, MD, a maternal fetal medicine specialist on the fetal surgery team at Ochsner Medical Center. “That’s why fetal surgery is one of the most exciting developments in the treatment of spina bifida, with unparalleled results for the baby.”
Kaci and Anthony Boudreaux live in nearby Thibodaux, Louisiana and are the parents of a two-year-old daughter. They learned of their son’s birth defect during a routine ultrasound at a Terrebonne General outreach clinic and were referred to Ochsner’s maternal fetal medicine (MFM) team who advised them of their options.
“Anything that would help or benefit the baby, we wanted to do,” said Kaci of choosing to have the extremely serious surgery.
During the delicate two hour operation, Ochsner’s fetal surgery team worked together to repair the hole in Kolby back. Kaci’s uterus was opened by the maternal fetal medicine physicians and the fetus was lifted and held just slightly out of his mother’s womb where the MMC defect in his spine was closed by the pediatric neurosurgeon. After a plastic surgeon closed his skin incision, he was placed back into the uterus and the MFM doctors then closed the uterus tightly. During the procedure, two pediatric cardiologists and two obstetric anesthesiologists monitored Kolby and his mother to make sure they remained stable. A neonatology team stood by in case of an emergent delivery. At the time of surgery, little Kolby weighed just over one pound.
When he was born 12 weeks later, Kolby weighed 4 pounds, 12 ounces. His physicians are thrilled with his prognosis, saying it is the best result they could have hoped for. Kolby left the hospital with excellent leg movements, functioning bowel and bladder and no evidence of hydrocephalus.
“To be able to intervene early enough so that a child will be able to walk, that’s huge,” said Cuong Bui, MD, the pediatric neurosurgeon on the fetal surgery team at Ochsner Medical Center. “To save a child from a lifelong dependency on a shunt is remarkable. It doesn’t only impact the baby, but it impacts the entire family. This is a landmark procedure for Ochsner, and also for the state and the region.”
“It means a lot to have a hospital near my family because we’re all really close,” said Kaci. “It would be very difficult to travel to another state and spend more time away from my daughter. Being at Ochsner makes it easier and more comfortable than going somewhere else to have the surgery.”
Since the first successful in utero spina bifida repair in 1997, only a small handful of hospitals in the country have performed the surgery because it involves specialists from numerous high-end departments including maternal fetal medicine, pediatric neurosurgery, pediatric cardiology, plastic surgery, general surgery, pediatrics, ICU, NICU and anesthesia. Historically, most patients have been referred to programs in California, Tennessee or Pennsylvania for the procedure, where they may have to remain for up to eight weeks for follow-up care.
“We knew we had everything necessary to offer this surgery, from the doctors and nurses to the equipment to the after care for both mom and baby, and we knew we could provide quality care equal to the hospitals that pioneered the procedure,” said Bui. “We spent a full year planning, preparing and practicing before we were willing to perform it.”
“I really appreciate everything the doctors have done because it has made a big difference for me and for Kolby,” said Kaci. “I hope he can run around and play, and not have too many concerns of what he can and can’t do. I think if we hadn’t come to Ochsner, he wouldn’t have had such a great outcome.”
“It makes me happy to see how well Kaci and the baby are doing,” said Moore. “That’s the best part of my job – to take care of a patient and give them something wonderful in the end.”
Ochsner’s gynecology and neurosurgery programs are recognized by U.S. News and World Report’s “Best Hospitals” as among the top 50 in the country. For more information on this procedure and treatment options, please visit ochsner.org/fetalsurgery or call 504-842-6290.
Ochsner Health System is southeast Louisiana’s largest non-profit, academic, multi-specialty, healthcare delivery system with eight hospitals and 38 health centers in Louisiana. Ochsner has been named the Consumer Choice for Healthcare in New Orleans for 16 consecutive years and is the only Louisiana hospital recognized by U.S. News and World Report as a “Best Hospital” across 11 specialty categories. Ochsner employs more than 13,000 employees, over 850 physicians in over 90 medical specialties and subspecialties and conducts over 300 clinical research trials annually. Ochsner Health System is proud to be a tobacco-free environment. For more information, please visit ochsner.org and follow us on Twitter and Facebook.