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Like all babies, Faith’s story begins before she was born. But unlike others, her history was complicated by a prenatal diagnosis of myelomeningocele – spina bifida – at the age of 20 weeks. A complex and permanently disabling birth defect, spina bifida involves incomplete development of a portion of the spinal cord and associated nerves, as well as the surrounding spinal bones and overlying muscle. At birth, the incompletely developed portion of the spinal cord protrudes through the open skin.
Infants born with spina bifida are at risk for a range of associated conditions, including hydrocephalus, which may require placement of a shunt to relieve pressure inside the skull caused by the excess fluid on the brain. They are prone to life-threatening infections and may suffer loss of sensation or paralysis below the level of the spinal cord defect, as well as ambulatory problems, deformities of the hips and lower back pain, leading to lifelong disability.
“We were devastated when we learned our baby had spina bifida,” says Faith’s mother Colette, who is a resident of Dallas. “Our emotions were all over the place. We had gone for a routine ultrasound to find out the gender, and the radiologist noticed an abnormality. When we learned of the possibility of spina bifida, my husband started doing research on the Internet.”
Colette’s obstetrician/gynecologist referred her to a maternal-fetal medicine specialist at Baylor University Medical Center in Dallas, who confirmed the diagnosis and referred her to the Texas Fetal Center at Children’s Memorial Hermann Hospital and The University of Texas Health Science Center at Houston (UTHealth) Medical School.
During their two-day visit, they met with pediatric surgeon KuoJen Tsao, M.D., and other members of the hospital’s multidisciplinary team to determine a treatment plan. The medical team would become the first in Texas to perform an in utero spina bifida repair.
Dr. Tsao had begun screening patients for in utero repair in early 2011, based on the results of a landmark study that found major benefits for fetal surgery in patients with spina bifida. The results of the Management of Myelomeningocele Study (MOMS) were published in an article entitled “A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele,” which appeared in the February 9, 2011, issue of the New England Journal of Medicine. Colette and Ivan learned of the MOMS trial during their Internet search.
With support from the National Institutes of Health, MOMS studied the effects of fetal surgery for the repair of spina bifida to the standard-of-care surgery for the disorder after birth. The study found that if a baby undergoes surgery in utero, the serious complications associated with spina bifida could be reversed or lessened with the operation. Fetal surgery decreased the need for shunting at 12 months for the infants who participated in the study, and nearly half were able to walk without crutches by age two-and-a-half.
“The MOMS study is exciting because it is the first to show that fetal surgery can result in greatly improved outcomes,” says Dr. Tsao. “But in fetal surgery, there are risks to the mother and the baby, and we weigh those risks carefully.”
The physicians were up front with the couple about the risks, which include infection, bleeding, miscarriage, stillbirth, placental abruption, uterine scar separation/rupture, preterm ruptured membranes and preterm birth. Medically, Colette was a good candidate, and the surgery itself was straightforward, Dr. Tsao says. A special stapling device was used to cut through the uterine wall and close blood vessels to prevent bleeding. Once the fetus was exposed, the gap in her spine was closed, and the surgical team returned the one-pound baby to the uterus.
The couple says they relied in large part on their faith in making the decision to go forward with the surgery. “I had a lot of anxiety, especially about the anesthesia,” Colette says. “Once I learned about the possibility of in utero repair, I wanted to do it. By the time I got to Houston, I had already made up my mind. And once I make up my mind, that’s it. We wanted to give our baby the best chance possible.”
Colette gave birth almost nine weeks later, on July 4, 2011, two weeks prior to her 34-week planned delivery date. “We named her Faith because at many points in our journey, it was faith that kept us going,” she says.
“When I think back about the surgery, my lasting impression was of the outstanding care I received from the doctors,” she adds. “It was more than a check-in, check-out relationship. It was genuine caring, and we’ve been singing their praises ever since."