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Spina Bifida

Topic Overview

What is spina bifida?

Spina bifida is a type of birth defect called a neural tube defect. It occurs when the bones of the spine (vertebrae) don't form properly around part of the baby's spinal cord. Spina bifida can be mild or severe.

  • The mild form is the most common. It usually doesn't cause problems or need treatment. You can't see the defect, but some people may have a dimple, birthmark, or hairy patch on their back. Most people with this form don't know they have it until they get a back X-ray for another reason.
  • A rare and more severe form is meningocele (say "muh-NIN-juh-seel"). In this form, fluid leaks out of the spine and pushes against the skin. You may see a bulge in the skin. In many cases, there are no other symptoms.
  • The most rare and severe form is myelomeningocele (say "my-uh-loh-muh-NIN-juh-seel"). It's what most people mean when they say "spina bifida." Part of the spinal nerves push out of the spinal canal, and the nerves are often damaged. You may see a bulge in the skin. In some babies, the skin is open and the nerves are exposed.

What causes spina bifida?

The exact cause of this birth defect isn't known. Experts think that genes and the environment are part of the cause. For example, women who have had one child with spina bifida are more likely to have another child with the disease. Women who are obese or who have diabetes are also more likely to have a child with spina bifida.

What are the symptoms?

Your child's symptoms will depend on how severe the defect is. Most children with the mild form of spina bifida don't have any problems from it.

In many cases, children with meningocele don't have any symptoms.

Children with the most severe form of spina bifida often have spine and brain issues that cause serious problems. They may have:

  • Little or no feeling in their legs, feet, or arms, so they may not be able to move those parts of the body.
  • Bladder or bowel problems, such as leaking urine or having a hard time passing stools.
  • Fluid buildup in the brain (hydrocephalus). Even when it is treated, this may cause seizures, learning problems, or vision problems.
  • A curve in their spine, such as scoliosis.

How is spina bifida diagnosed?

During pregnancy, you can have a blood test (maternal serum triple or quadruple screen) and an ultrasound of the developing baby. These tests check for signs of spina bifida and other problems. If test results suggest a birth defect, you can choose to have an amniocentesis. This test helps confirm if the baby has spina bifida.

After birth, a doctor can usually tell if a baby has spina bifida by how the baby's back looks. If spina bifida is suspected, the doctor may do an X-ray, an MRI, or a CT scan to see if the defect is mild or severe.

How is it treated?

Most children with the mild form of spina bifida don't need treatment. Children with meningocele may not need treatment either. But children with the most severe form usually need surgery. Sometimes surgery to correct severe spina bifida can be done before a baby is born.

A child who has hydrocephalus will need surgery to put in a drainage tube called a shunt. It relieves pressure on the brain by draining excess fluid into the belly. This keeps the swelling from causing more damage to the brain.

Experts such as physical therapists and occupational therapists work with children who have severe spina bifida. The work starts soon after the child's birth. These therapists can teach parents and caregivers how to do exercises and activities with the child.

Some children may need a brace, a wheelchair, or other aids. Children with bladder control problems may need help using a catheter each day to prevent infection and kidney damage. To help prevent bowel problems, parents usually begin working with the doctor or nurse on managing bowel care as soon as the child starts eating solid food. As children with severe spina bifida grow, other treatments and surgeries may be needed to manage problems that arise.

There are many ways you can support your child:

  • Go to all scheduled doctor visits.
  • Help your child be active, and encourage him or her to be as independent as possible.
  • Encourage your child to drink plenty of fluids and eat foods high in fiber, such as whole grains and fruits. This helps prevent constipation.
  • Check your child's skin each day for cuts, bruises, and pressure sores. Children who have little or no feeling in their legs and feet may get hurt and not know it. And that could lead to an infection.
  • Be sure to get your child's vision checked regularly. Children with spina bifida often have weak eye muscles.
  • Keep your child away from latex products if he or she has a latex allergy.
  • Watch for learning difficulties, and talk to your child's doctor or teacher if you have any concerns.
  • When your child is ready to start school, talk with teachers and other school workers. Public schools have programs for people ages 3 through 21 with special needs.

Remember that your needs are important too. Take good care of yourself so you can stay healthy and have the energy to enjoy your child. Make time for activities you like, even if it's just for a short while each day. And reach out to family, friends, and support groups when you need help.

How can you prevent spina bifida?

Before and during pregnancy, a woman can help prevent spina bifida in her child.

  • Get plenty of folic acid each day, both before you get pregnant and during pregnancy. All foods made from grains and sold in the United States have folic acid added. Foods rich in folic acid include fortified breakfast cereals and breads, spinach, and oranges. Your doctor may recommend that you also take a daily vitamin with folic acid or a folic acid supplement.
  • If you take medicine for seizures or acne, talk with your doctor before you get pregnant. Some of these medicines can cause birth defects.
  • Don't drink alcohol while you are pregnant. Any amount of alcohol may affect your baby's health.
  • Don't let your body get too hot in the first weeks of pregnancy. For example, don't use a sauna or hot tub. And treat a high fever right away. The heat could raise your baby's risk for spina bifida.

Health Tools Health Tools help you make wise health decisions or take action to improve your health.

Health Tools help you make wise health decisions or take action to improve your health.


Decision Points focus on key medical care decisions that are important to many health problems. Decision Points focus on key medical care decisions that are important to many health problems.
  Pregnancy: Should I Have Amniocentesis?
  Pregnancy: Should I Have Screening Tests for Birth Defects?

Actionsets help people take an active role in managing a health condition. Actionsets are designed to help people take an active role in managing a health condition.
  Growth and Development: Helping Your Child Build Self-Esteem

Other Places To Get Help

Organizations

Easter Seals
233 South Wacker Drive
Suite 2400
Chicago, IL 60606
Phone: 1-800-221-6827
Phone: (312) 726-6200
Fax: (312) 726-1494
TDD: (312) 726-4258
Web Address: www.easterseals.com
 

Easter Seals provides information and services to help people who have disabilities. Its programs include counseling, training, social clubs, camping, transportation, and referrals. Call to find out about the chapter nearest to you. Or call to receive a catalog of Easter Seals publications and products.


National Institute of Neurological Disorders and Stroke
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Phone: 1-800-352-9424
Phone: (301) 496-5751
Web Address: www.ninds.nih.gov
 

The National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health, is the leading U.S. federal government agency supporting research on brain and nervous system disorders. It provides the public with educational materials and information about these disorders.


KidsHealth for Parents, Children, and Teens
Nemours Home Office
10140 Centurion Parkway
Jacksonville, FL 32256
Phone: (904) 697-4100
Web Address: www.kidshealth.org
 

This website is sponsored by the Nemours Foundation. It has a wide range of information about children's health—from allergies and diseases to normal growth and development (birth to adolescence). This website offers separate areas for kids, teens, and parents, each providing age-appropriate information that the child or parent can understand. You can sign up to get weekly emails about your area of interest.


March of Dimes
1275 Mamaroneck Avenue
White Plains, NY  10605
Phone: (914) 997-4488
Web Address: www.marchofdimes.com
 

The March of Dimes tries to improve the health of babies by preventing birth defects, premature birth, and early death. March of Dimes supports research, community services, education, and advocacy to save babies' lives. The organization's website has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care.


Spina Bifida Association
4590 MacArthur Boulevard NW
Suite 250
Washington, DC 20007-4226
Phone: 1-800-621-3141
Phone: (202) 944-3285
Fax: (202) 944-3295
Email: sbaa@sbaa.org
Web Address: www.spinabifidaassociation.org
 

The Spina Bifida Association of America is a voluntary health agency that provides information about spina bifida to parents and health professionals to promote public awareness, advocacy, and research. This organization produces written and audiovisual materials, including a newsletter and brochures covering topics such as latex allergy and folic acid.


References

Other Works Consulted

  • Adzick NS, et al. (2011). A randomized trial of prenatal versus postnatal repair of myelomeningocele. New England Journal of Medicine. Published online February 9, 2011 (doi:10.1056/NEJMoa1014379).
  • American College of Obstetricians and Gynecologists (2003, reaffirmed 2011). Neural tube defects. ACOG Practice Bulletin No. 44. Obstetrics and Gynecology, 102(1): 203–210.
  • Ghatan S (2006). Myelomeningocele. In FD Burg et al., eds., Current Pediatric Therapy, 18th ed., pp. 377–380. Philadelphia: Saunders Elsevier.
  • Liptak GS (2013). Neural tube defects. In ML Batshaw et al., eds., Children with Disabilities, 7th ed., pp. 451–472. Baltimore, MD: Paul H. Brookes Publishing.
  • Liptak GS, Dosa NP (2010). Myelomeningocele. Pediatrics in Review, 30(31): 443–450.
  • Sandler AD (2010). Children with spina bifida: Key clinical issues. Pediatric Clinics of North America, 57(4): 879–892.
  • Sawin KJ, Thompson NM (2009). The experience of finding an effective bowel management program for children with spina bifida: The parent's perspective. Journal of Pediatric Nursing, 24(4): 280–291.
  • U.S. Preventive Services Task Force (2009). Folic acid to prevent neural tube defects. Available online: http://www.uspreventiveservicestaskforce.org/uspstf/uspsnrfol.htm.

Credits

By Healthwise Staff
Primary Medical Reviewer John Pope, MD - Pediatrics
Specialist Medical Reviewer Louis Pellegrino, MD - Developmental Pediatrics
Last Revised March 18, 2013

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