Sixty-five million women of childbearing age are at risk of having a pregnancy affected by spina bifida, and an estimated 70,000 people in the United States are currently living with spina bifida. It is the most common permanently disabling birth defect. Dianne McBrien, MD, pediatrician at University of Iowa Children’s Hospital, talks more about spina bifida:

What is spina bifida?

Spina bifida is a common congenital defect. It’s a birth defect that is caused by part of the spine failing to form properly in utero. So that creates an opening on the spine where the spine is usually protruding and that results in paralysis of different levels: bladder and bowel problems, problems moving their legs and feet.

When in pregnancy does spina bifida occur?

Very, very early in pregnancy—about four to six weeks of gestation, which is before many women even know they’re pregnant.

What causes spina bifida?

We don’t know, but we have some good ideas and building on those ideas there are—like a lot of things—genetic factors and environmental factors. The propensity or tendency to have a child with spina bifida may run in some families; we know that. And there’s also the role in folic acid supplementation in preventing spina bifida. So we think that there are some nutritional factors, as well.

Can women take precautions to prevent spina bifida before becoming pregnant?

There are things that women can do to reduce the risk dramatically. Women should talk to their doctor about taking folic acid if you are sexually active and you are of reproductive age. In other words, if you are of the age where you can still conceive and have a child—if this is after you’ve had your first period but before you’ve completed menopause—you should be taking folic acid every day. There are some women who need to take more folic acid to help reduce the risk because they may have chronic health conditions, such as women with diabetes and women with seizure disorders. If you have any questions about how much folic acid you should take, you should speak to your doctor.

Are there different types of spina bifida? What are they?

There are many different kinds and it all depends on where on the back the opening is. Obviously the lower on the back, the milder the spina bifida is. Most kids with spina bifida have an opening low on their waists which will cause problems moving their legs and feet. Many people have a very mild kind of spina bifida and don’t know it. This is called spina bifida occulta and it is caused by the bones of your back failing to form. But those people, when you look at their backs, they have normal backs. This kind of spina bifida does not require treatment. Most of the time when we talk about spina bifida, we’re not talking about spina bifida occulta, which is usually an occasional finding on X-ray. We’re talking about people who actually have all the symptoms of paralysis: bowel and bladder problems, problems moving the feet, etc.

How is spina bifida treated?

Treatment starts, actually, the first day after a baby with spina bifida is delivered. A team of neurosurgeons will actually close the back. Because most babies with spina bifida will have something called hydrocephalus, which is also known to some people as water on the brain, a shunt will be put in either at that time or several days later. The other treatments, some kids with spina bifida will have problems with their hips, their knees, and feet that may require physical therapy, casting, surgery—it just depends on the child.

What sorts of challenges do babies born with spina bifida generally face?

The biggest challenge is probably the paralysis. And some children with spina bifida have very minimal paralysis and can walk without the aid of braces or crutches; others need bracing and crutching to walk. Some kids with spina bifida will not be able to walk at all and will use a wheelchair for all of their locomotion. Also, because of the hydrocephalus, or the water on the brain, that condition itself can be associated with learning disabilities and some many of these children will need special help in school. They can attend the same school as everybody else, usually be in the same classroom as the other kids, but they may need special help in such things as math or composition writing or paying attention in school. Also there are problems with the bladder and the kidneys. Most people with spina bifida don’t have normal sensation that tells them when they have to urinate, and so they may have problems being continent. There are several treatments for that, as well.

Is there a cure for spina bifida?

At this time, no, unfortunately there is not a cure for spina bifida. We know only how to reduce, how to help prevent it, and how to manage the complications of it.

Does spina bifida shorten the life of the person affected?

You know, we don’t know that for sure. Thirty or 40 years ago, it very much used to because people with spina bifida can have severe kidney problems if they don’t get proper, regular care. Now we’re not sure. Most people with spina bifida live well into adulthood and may have an excellent chance of getting old just like everybody else.

Is UI Children’s Hospital currently involved in any research with regard to spina bifida?

One of our neurologists is interested. Alexander Bassuk, MD, PhD,  has done some research in looking at the genetic factors that contribute to having a baby with spina bifida, so that’s a very interesting topic right now.

Dianne McBrien, MD

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Alexander Bassuk, MD, PhD

University of Iowa Children’s Hospital