Facts about spina bifida every parent should know

October is National Spina Bifida Awareness Month. Spina bifida is the most common permanently disabling birth defect in the U.S. The condition affects 1,500 children each year. What do you know about the condition? Learn more about spina bifida types, what causes spina bifida and much more.

What is spina bifida?

Spina bifida is a condition that affects the spine and happens when the spinal cord does not develop properly during early pregnancy. Because the spinal column doesn’t close all the way, it leaves the spinal cord unprotected. This can cause damage to the spinal cord and nerves.

Spina bifida is usually visible at birth. It is considered a neural tube defect, which describes birth defects of the brain, spine or spinal cord. Spina bifida may cause physical and intellectual disabilities, depending on:

  • The size and location of the opening on the spine
  • Whether the spinal cord and nerves are damaged

Spina bifida types

There are three common types of spina bifida, including:

  • Myelomeningocele: This is the most serious type of spina bifida. In this type, a fluid sac comes through an opening in a child’s back. The sac contains part of the spinal cord and nerves, which are damaged. This type of spina bifida causes moderate to severe disabilities. The issues may affect the legs and feet, including not being able to move the legs, and the bladder and intestines, causing issues going to the bathroom.
  • Meningocele: In this type, a fluid sac also comes through an opening in a child’s back. The spinal cord is not in the sac, and there is usually little to no nerve damage. This type can cause minor disabilities.
  • Spina bifida occulta: This is the mildest type of spina bifida, which may not cause any disabilities. Often, this type may not be discovered until adolescence or adulthood. In this type, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are not affected.

What causes spina bifida? Is spina bifida genetic?

The cause of spina bifida is unknown. Researchers believe it may be a combination of genetics and the environment that causes the condition. There are some things women who are pregnant or could get pregnant can do to help prevent spina bifida, including:

  • Take at least 400 micrograms of folic acid each day. Spina bifida happens early in a pregnancy, often before a woman even knows she is pregnant. All women who are sexually active should take folic acid supplements. While taking folic acid and getting the best prenatal care cannot completely prevent spina bifida, it can reduce the risk.
  • Talk with your primary care physician or pharmacist. If you’re planning to get pregnant or are sexually active, understanding how any prescriptions, over-the-counter medicines or supplements could affect a potential pregnancy can help you make decisions about your care.
  • Work with your provider to monitor and manage your medical conditions. If you have a condition such as Type 1 or Type 2 diabetes or are overweight, you will want to work with your OB/GYN or primary care provider before getting pregnant. Once you are pregnant, your OB/GYN may refer you to a maternal-fetal medicine specialist to get extra care during your pregnancy.
  • Avoid overheating your body (such as in a sauna or hot tub), and treat any fever you may have.

Norton Children’s Spina Bifida Clinic

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Spina bifida treatment at Norton Children’s

Treatments for spina bifida will be different for each child. Children with myelomeningocele and meningocele likely will need more treatments than children with spina bifida occulta.

Parents of children who have the more severe forms of spina bifida often find themselves making appointments with a pediatrician, urologist, gynecologist, orthopedic surgeon, neurosurgeon and spine surgeon all in the same week. It can be taxing.

One of the things that sets Norton Children’s Hospital apart is its special Spina Bifida Clinic, held on the third Wednesday of every month. The clinic allows patients with the condition to see all of their doctors in a single day, and it allows the physicians to better coordinate care.


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