What is Spina Bifida?

Just as there is a broad range of outcomes along the autism spectrum, those with Spina Bifida can have effects ranging from mild to severe. Every child is affected differently, and it is impossible to predict a child’s outcome before or at birth. Today’s Spina Bifida is different from that of even a decade ago. New treatments, surgeries, and therapies offer children even greater hope for productive and full lives. People with Spina Bifida attain advanced education, careers, and families of their own. They are doctors, teachers, artists, athletes, and parents. Spina Bifida is only one part of their lives; it does not define them.

Spina Bifida occurs when the baby’s spine fails to close during the first months of pregnancy. The most common and also the most severe type of Spina Bifida, called myelomeningocele, occurs when the spinal nerves and their protective coverings protrude through the open part of the spine. (For information about the other types of Spina Bifida, please visit the Spina Bifida Association.)

In those with Spina Bifida, the brain is usually positioned further down into the upper spinal column than it should be. This change in position is part of a condition called the Chiari malformation. The brain tissue displaced into the upper spinal canal blocks the normal flow of cerebrospinal fluid. This leads to a build-up of fluid within the ventricles of the brain, a condition called hydrocephalus. In 80 to 90 percent of Spina Bifida cases, the hydrocephalus can only be treated by the insertion of a drainage tube called a shunt. The majority of people with Spina Bifida have average to above average intelligence. Many do have specific learning challenges that informed parents and educators can help the child to overcome.

Bowel and bladder function are controlled by nerves from the lowest levels of the spinal column. Most people with Spina Bifida have some challenges controlling their bowel and bladder function, but with intermittent catheterization and/or bowel management programs, nearly all achieve continence.

Why Did This Happen?
This is not your fault. There is no known cause for Spina Bifida. The problem occurs very early in pregnancy, probably in the third or fourth week following fertilization. Research has shown that mothers who take folic acid prior to becoming pregnant have a reduced risk of Spina Bifida; however, many people who have taken folic acid still have babies with Spina Bifida, and many people who did not take folic acid still have healthy babies. No one knows why. It just happens.

What Should I Expect?
You are probably feeling very scared and upset right now, and that is completely normal. The most difficult part of having a child with Spina Bifida is being pregnant with the “diagnosis” and not knowing the child who happens to have that diagnosis. With time and research and grieving, most parents are able to regain the excitement they once had for the pregnancy. It helps to name your baby, shop, let someone throw you a baby shower, and decorate the nursery. But if these feelings persist and you are not able to function, talk to your doctor about seeing a counselor or taking medication to help you through this difficult time. Most parents say that when they hold their babies for the first time, they feel capable of dealing with whatever may come

During your pregnancy, you will probably meet with many specialists, which may include a perinatologist, neonatologist, pediatric neurosurgeon, and/or genetic counselor. Use these appointments to learn as much as you can about your child’s diagnosis, but be prepared for doctors to tell you that they won’t know much until the baby is born. Only your child has the answers to some of your questions.

One of your options is to participate in a medical trial called the Management of Myelomeningocele Study (MOMS), which is testing whether it is better for babies to have surgery before or after birth. Another option is adoption. Should you decide that you cannot raise this baby, know that there are people waiting to adopt babies with Spina Bifida.

For those that do not have prenatal surgery, your baby will have surgery to close the lesion on its back in the 24-48 hours after birth. After surgery, the baby will be monitored in the NICU; the average length of stay is 2 weeks, but this varies based on the child’s needs. After your child comes home, 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. Your child may also benefit from Babies Can’t Wait which provides regular physical, occupational, and other therapies as needed for free or at an affordable rate up to age 3.

Most importantly, your child will be much more “normal” than you can probably imagine at this point. He or she will be a cute, cuddly baby who needs to be held, fed, diapered, burped, and loved just like any other baby. They do not look any different than other babies, and just like other kids they develop their own wonderful personalities. Kids with Spina Bifida have extra challenges, but they have much more in common with their peers than they have differences. Spina Bifida does not define them.

Where Can I Find More Information?

It is sometimes discouraging and frightening to “Google” Spina Bifida and find only worst case scenarios. Below are very reputable web sites and resources for your research.

Spina Bifida Association

Look to this site for a good overview of Spina Bifida, the latest research, frequently asked questions, a resource directory, a list of Spina Bifida clinics, and much more.

Management of Myelomeningocele Study (MOMS)

Learn more about the MOMS trial, including process for inclusion, risks, and follow up. This site also includes good information about Spina Bifida, such as an excellent “Common Myths” section. Check out the “Video About MOMS” on the homepage.

Babycenter Spina Bifida Kids Message Board

Want to learn more about parenting a child with Spina Bifida? Join the more than 400 parents who share their stories, ask questions, impart tips, and support each other on this vibrant message board. These moms and dads answer questions honestly and compassionately based on their experiences and gathered knowledge.