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  • What is spina bifida?
    • Spina bifida (sounds like: spine-ah bi-fah-dah) is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect (NTD). It can happen anywhere along the spine if the neural tube does not close all the way. The backbone that protects the spinal cord does not form and close as it should, which can result in damage to the spinal cord and nerves.

      There are different types of Spina bifida that can cause physical and mental disabilities that range from mild to severe. The severity depends on:
      * The size of the opening in the spine.
      * The location of the opening in the spine.
      * Whether part of the spinal cord and nerves are affected.

  • What are the different types of spina bifida?
    • The three most common types of spina bifida are:
      * Myelomeningocele (sounds like: my-low-ma-nin-jo-seal)
      When people talk about spina bifida, most often they are referring to myelomeningocele. Myelomeningocele is the most serious type of spina bifida. With this condition, a sac of fluid comes through an opening in the baby’s back that has part of the damaged spinal cord and nerves. This type of spina bifida causes moderate to severe disabilities, such as problems affecting how the person goes to the bathroom, loss of feeling in the person’s legs or feet, and not being able to move the legs.
      * Meningocele (sounds like: ma-nin-jo-seal)
      Another type of spina bifida is meningocele. With meningocele a sac of fluid comes through an opening in the baby’s back, but the spinal cord is not in this sac. There is usually little or no nerve damage. This type of spina bifida can cause minor disabilities.
      * Spina Bifida Occulta (sounds like: o-cult-tuh)
      Spina bifida occulta is the mildest type of spina bifida. It is sometimes called "hidden" spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, spina bifida occulta is not discovered until late childhood or adulthood. This type of spina bifida usually does not cause any disabilities.

  • How do I know if my baby has spina bifida?
    • Spina bifida can be diagnosed during pregnancy or after the baby is born, althoughj spina bifida occulta might not be diagnosed until late childhood or adulthood, or might never be diagnosed.

      During pregnancy there are screening tests (prenatal tests) to check for spina bifida and other birth defects.
      * AFP - stands for alpha-fetoprotein (sounds like: al-fa-fee-toe-pro-teen), a protein the unborn baby produces. This is a simple blood test that measures how much AFP has passed into the mother’s bloodstream from the baby. A high level of AFP might mean that the baby has spina bifida. An AFP test might be part of a test called the “triple screen” that looks for neural tube defects and other issues.
      * Ultrasound - An ultrasound is a type of picture of the baby. In some cases, the doctor can see if the baby has spina bifida or find other reasons that there might be a high level of AFP. Frequently, spina bifida can be seen with this test.
      * Amniocentesis (sounds like: am-knee-oh-sin-te-sus) - For this test, the doctor takes a small sample of the amniotic fluid surrounding the baby in the womb. Higher than average levels of AFP in the fluid might mean the baby has spina bifida.

      Sometimes, spina bifida might not be diagnosed until after the baby is born. This might be seen in a hairy patch of skin or dimple on the baby’s back. A doctor can use an image scan, such as an, X-ray, MRI, or CT, to get a clearer view of the baby’s spine and the bones in the back. Other times, spina bifida is not diagnosed until after the baby is born because the mother did not receive prenatal care or an ultrasound did not show clear pictures of the affected part of the spine.

  • How can you treat spina bifida?
    • Not all people born with spina bifida have the same needs, so treatment will be different for each person. Some people have problems that are more serious than others. People with myelomeningocele and meningocele (“open” spina bifida) usually have more health issues and need more types of treatments. The treatment varies from surgery for open spina bifida to a shunt that allows fluid to drain from the baby’s brain.

      Regular physical activity is important for all people, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for people with spina bifida to be active. For example, they can:
      * Engage in active play with friends.
      * Walk in the neighborhood.
      * Participate in community programs, such as the Early Intervention Program for Infants and Toddlers with Disabilities and Special Education Services for Preschoolers with Disabilities, which are free programs in many communities.
      * Enjoy parks and recreation areas with playgrounds that are accessible to people with disabilities.
      * Do exercises recommended by a physical therapist.
      * Attend summer camps and recreational facilities that are accessible for those with disabilities.
      * Participate in sports activities (for example, swimming) and teams for people with or those without disabilities.

  • What causes spina bifida?
    • We do not know all of the causes of spina bifida. The role of factors, such as genes and the environment, need to be studied further.

  • How do you prevent spina bifida?
    • There are some things women can do before and during pregnancy that can help reduce the risk of having a baby with spina bifida. If you are pregnant or could get pregnant, the following are some guidelines for reducing your chances for having a baby with spina bifida:

      * Take 400 micrograms (mcg) of folic acid every day. If you already have had a pregnancy affected by spina bifida, talk with your doctor about a prescription to take 4,000 mcg (4.0 milligrams). Folic acid prevents most, but not all, cases of spina bifida.
      * Talk to your doctor or pharmacist about any prescription and over-the-counter drugs, vitamins, and dietary or herbal supplements you are taking.
      * If you have a medical condition―such as diabetes or obesity―be sure it is under control before you become pregnant.
      * Avoid overheating your body during pregnancy, as might happen if you use a hot tub or sauna.
      * Treat any fever you have right away with acetominophen.

      Spina bifida happens in the first few weeks of pregnancy, often before a woman knows she’s pregnant. Although folic acid is not a guarantee that a woman will have a healthy pregnancy, taking folic acid can help reduce a woman's risk of having a pregnancy affected by spina bifida. Because half of all pregnancies in the United States are unplanned, it is important that all women who can become pregnant take folic acid before and during pregnancy.

  • Where can I get more information about spina bifida?

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Last Revised: January 28, 2014


Data Query

Spina Bifida (without anencephaly) Data Query

Access the spina bifida data (without anencephaly) in the WI EPHT online database. Review the Data Details below to learn about interpreting the data.

The WI EPHT website has data about other birth defects:

Data Details

What is the data source?

The website provides data from the Wisconsin Birth Defects Registry, which is maintained by the Birth Defect Prevention and Surveillance program, Wisconsin Department of Health Services.

How does WI EPHT measure birth defects?

The WI EPHT website includes the following measures:

  • Prevalence rate of live births by geography
  • Number of birth defects by geography

What are some considerations for interpreting the data?

While significant effort is made to ensure the accuracy and completeness of the data, there are limitations that are listed below:

  • The Wisconsin Birth Defects Registry does not currently receive reports from all providers in the state. Thus, the numbers presented here represent only a subset of the actual cases.
  • Reporters have up to two years to provide data to the registry, so some cases from the most recent years may not yet be included in the registry.

There are many factors that can contribute to a disease and should be considered when interpreting the data. Some of these include:

  • Demographics, e.g., race, gender, age
  • Socioeconomic Status, e.g., income level, education
  • Geographic, e.g., urban vs. rural
  • Changes in the medical field, e.g., diagnosis patterns, reporting requirements