What is Spina Bifida?

Spina Bifida Advances

According to the Spina Bifida Association of America, spina bifida is the most commonly-occurring permanently disabling birth defect, affecting one of every 1,000 newborns. In spite of that, spina bifida has a short history simply because until just 15 or 20 years ago, children with spina bifida rarely lived past childhood. However, in that time, advances in surgical care, infection control, and an increased focus on adaptive life skills have allowed children with spina bifida to grow into adults with spina bifida. And they are adults who are not disabled but able and willing to meet the challenges of living in a world that has to be continually educated about adapting to all abilities.

Folic Acid

When a child is born with a birth defect or disability, it's easy to feel guilty. Shannon Nunnery initially blamed herself when she discovered, at 20 weeks gestation, that her fetus had spina bifida. Eventually, she realized that sometimes things happen that are beyond human control.

In the case of spina bifida, there has been so much information about the importance of folic acid in the diet of any woman who is of childbearing years that a woman who didn't take supplements before she knew she was pregnant may feel that she caused the condition. The reality is that, although folic acid is credited with a great reduction in spina bifida cases, it is not a miracle cure. Even women who took the supplements religiously give birth to babies with spina bifida.

Cindy Brownstein, CEO of the Spina Bifida Association of America, says no mother should ever feel guilt for any reason. "There is so much we don't know about genetics and how this occurs and why," says Brownstein. "Hopefully research will someday give us those answers, but right now we just don't have them."

Brownstein says that the Spina Bifida Association can help women and their husbands get through those early feelings of guilt by linking them up with support groups. In the meantime, every woman of childbearing age who has any chance of becoming pregnant should take a supplement containing folic acid. Women who have spina bifida or who have had a child with spina bifida should consult with their physician about a higher level of folic acid.

Fetal Surgery

When Emily Gonzalez-Abreu was pregnant with her daughter, Angeline, she found out at 16 weeks that the baby had spina bifida. The doctors advised her to have fetal surgery to close the opening in the spinal cord, so when she was 23 weeks pregnant, Gonzalez-Abreu became the 88th person at Vanderbilt University Medical Center to have in-utero surgery.

During fetal surgery for spina bifida, the baby is partially removed from the womb, and the opening over the fetus' spinal cord is sewn shut. It's not a cure—the baby will still suffer from some level of impairment, but it does seem to lesson the severity of spina bifida by preventing further damage to the spinal cord. In addition, although it's too soon to tell conclusively, the surgery seems to cut down on the severity of the hydrocephalus that often accompanies spina bifida, thus, leading to fewer developmental delays.

Shannon Nunnery, whose son Thaddeus was born in December 2001, had the surgery at Children's Hospital of Philadelphia when she was 26 weeks pregnant. Thaddeus currently does not have a shunt, and doctors think he will eventually walk with ankle braces. However, fetal surgery is still a relatively new procedure, and there are risks associated with it for both Mother and Baby. A good obstetrician who is experienced in high-risk pregnancy is essential in making the right decision.