What is Spina Bifida?
Spina Bifida describes a group of neural tube defects (NTD's) that occur when the baby's developing spine (neural tube) fails to close properly. When most people speak of SB, they are referring to the most common and also most severe form, called myelomeningocele, which causes the spinal nerves to bulge through an opening in the back.
What causes SB?
There is no single known cause for SB. It is due to a complex interaction of both genetic and environmental factors occurring very early in the pregnancy (by the 4th week). The genetic factors that can cause SB are not well known. Research has shown that supplementation of folic acid (a "B" vitamin) reduces the risk of having a pregnancy affected by SB. However, many people who take folic acid still have babies with SB, and women who did not take folic acid still have healthy babies. No one knows why. It just happens. This means that there is still much to learn about the causes of SB, and it is nobody's fault.
How is SB diagnosed during pregnancy?
What medical issues do people with SB encounter?
People with SB have a number of medical issues to deal with throughout their lives.
Every individual with SB is affected differently, and it is impossible to fully predict a child's outcome before or at birth. Outcomes have improved over the past 50 years due to medical advancements. In addition, cultural attitudes toward individuals with disabilities have also changed, resulting in improved services. While some individuals with SB have significant disabilities, others are less severely affected. Many attain advanced education, and have careers and families of their own. They become doctors, teachers, artists, athletes, and parents. Spina Bifida is only one part of their lives; it does not define them.
What are the choices for women carrying fetuses with SB?
To learn the most about the prognosis for your pregnancy, it is recommended that you meet with a pediatric neurosurgeon and/or SB clinic as soon as possible. You will also need to meet with a maternal-fetal specialist or perinatologist to closely follow your pregnancy. You may also meet other specialists who care for people with SB. Use these appointments to learn as much as you can. After you have gathered enough information to understand the immediate and long term implications of SB, consider the choices available to you—terminating the pregnancy, prenatal or postnatal surgery, or adoption—what matters is that you make an informed choice about what works best for you and your family.
Prenatal or Postnatal surgery: For pregnancies diagnosed earlier than 25 weeks gestation, in-utero fetal surgery may be an option to close the baby's back before birth. There are potential risks and benefits of fetal surgery, and it is not appropriate for all women. For those who choose and qualify, an immediate referral must be made to a medical center where the operation is performed. Because fetal surgery is not standard practice at this time, most newborns with SB require surgery shortly after birth to prevent infection and further spinal cord damage.
Babies with SB should be delivered at a medical center that specializes in SB so they can receive specialty care during and after birth. This gives you and the specialists every chance to prepare for the best outcome. After surgery, the baby will be monitored in the neonatal intensive care unit. The average length of stay is 2 weeks, but this varies based on the child's needs. When the baby is discharged from the hospital, he or she will have periodic follow-up appointments with a pediatric neurosurgeon, orthopedist, urologist, and possibly other specialists. Appointments will be frequent in the first year, and usually less often as time passes.
To get more information and lifelong support, please contact Spina Bifida Association at 800 621 3141, ext 35; or via the website: www.sbaa.org.
Tim Brei, M.D.
Colleen Payne (SBA of Kentucky)
Gordon Worley, M.D.
This information does not constitute medical advice for any individual. As specific cases may vary from the general information presented here, SBA advises readers to consult a qualified medical or other professional on an individual basis.
Originally featured on Spina Bifida Association (sbaa.org) and reprinted with permission. Copyright ? 2012 Meredith Corporation.