With the conclusion of a landmark seven-year study showing clear benefits for babies who undergo fetal surgery to treat spina bifida, Vanderbilt has begun offering the delicate procedure, which repairs a baby’s spine while still in the mother’s womb.
The new Fetal Surgery for Spina Bifida program will be housed in the Junior League Fetal Center at Vanderbilt. Vanderbilt surgeons pioneered the procedure in 1997, and have performed more than 200 fetal repair surgeries.
Results of a National Institutes of Health-funded trial, the Management of Myelomeningocele Study (MOMS), demonstrate clear benefit for babies who undergo fetal surgery to treat spina bifida, the most common birth defect in the central nervous system. Enrollment in the MOMS trial was halted in December 2010 because researchers at three trial sites—Vanderbilt, the University of California at San Francisco, and Children’s Hospital of Philadelphia—found the procedure demonstrates significant benefit over surgical repair after birth.
“The results are very exciting and confirm what our surgeons and researchers found back in 1999,” says Dr. John Brock III, BA’74, surgeon-in-chief for the Monroe Carell Jr. Children’s Hospital at Vanderbilt and principal investigator for the Vanderbilt MOMS site.
It is so innovative to open the womb and operate at the limits of viability with the hope of improving a nonfatal illness.
—Dr. William Walsh, professor of pediatrics and director of nurseries
The findings, published in the Feb. 9 online issue of the New England Journal of Medicine, show that babies who have corrective surgery for a serious form of spina bifida (myelomeningocele) while still in the uterus experience a reduction in potentially life-threatening hydrocephalus and have an increased ability to walk.
Vanderbilt experts, led by maternal/fetal surgeon Dr. Joseph Bruner, who is no longer with Vanderbilt, and Dr. Noel Tulipan, director of pediatric neurosurgery, pursued research in the early 1990s that led to the first such procedures in the country.
Children with spina bifida are often left with severe disabilities, including paralysis below the waist, and lifelong bladder and bowel problems. Nearly 90 percent of children with this disorder develop fluid build-up within the brain, which requires surgical placement of a shunt to drain fluid. A shunt, while necessary to save a child’s life, can impact intellectual development.
The MOMS trial found fetal surgery reduced the need for a shunt by nearly 30 percent and significantly improved the child’s chances of being able to walk.
MOMS did demonstrate an inherent risk in the fetal surgery. Babies were generally born at 34 weeks of gestation, often requiring a stay in a neonatal intensive care unit.
Before MOMS began, Vanderbilt had performed 177 fetal repairs. Maryann Dotegowski was patient No. 19. “When they found the spina bifida, our specialist here in New Jersey said if I were his wife, he’d send me to Vanderbilt,” Dotegowski recalls. “We got on a plane as soon as we could.”
Today her daughter, Emily, is an energetic middle-schooler who loves to sled. Dotegowski says while Emily has significant physical challenges, she believes her daughter is able to walk because of the fetal surgery.
“Almost every doctor we talked to said she should be paralyzed from the chest down.”
“It is so innovative to open the womb and operate at the limits of viability with the hope of improving a nonfatal illness,” says Dr. William Walsh, professor of pediatrics and director of nurseries at Vanderbilt. “This is the first surgery of its kind, and we knew there was a 100 percent chance of prematurity, so we had to be absolutely certain the benefits were greater than the risks.”
Find out more: www.childrenshospital.vanderbilt.org/fetalsurgery