The Department of Orthopaedic Surgery

Pediatrics

Patient Guide to Spina Bifida

What is "Spina Bifida?"

When a fetus is developing, the arches of the vertebra grow and close around the spinal cord to protect it. In some cases, however, part of the arch (known as the "laminar arch") fails to develop and does not close around the spinal cord. This is called "spina bifida."

Sometimes there are no problems found in patients with this defect (spina bifida oculta). At other times, however, it can lead to severe neurological problems. It can occur at any level of the spine or even at several levels in the same patient. The most common location is towards the bottom of the spine.

Does spina bifida run in families?

There is an increased risk of spina bifida occurring in the child of a parent who has the condition. There is not, however, a known genetic defect.

What are the signs and symptoms of spina bifida?

In patients with spina bifida "oculta" (meaning "hidden" in latin) there may be no signs or symptoms. In this case, the spinal arch has not closed, but the spinal cord underneath has retained its normal position and is not damaged. A child could grow up and never know that he or she has the defect.

These patients only have an increased risk of developing a condition called "spondylolisthesis."
In other patients with a lipomeningocele ("lipo" meaning 'fat"), a fatty mass pokes through the open part of the spinal arch. The soft mass can be felt in the back.

A dimple in the back or a hairy spot may also be seen.
More ominous signs of spinal cord damage that might result if the cord or the membranes covering it have protruded through the open arch (called "myelomeningocele") are muscle weakness, atrophy (i.e. a decreased size) of the calf or thigh muscle, and loss of function of the bladder.

What causes spina bifida?

The cause is unfortunately not known except that it is a birth defect. One thing that is well documented, however, is that women taking folate supplementation during the first part of pregnancy (when many important structures are developing) can reduce the risk of a child having the condition.

How is spina bifida treated?

At birth, a child with spina bifida should be seen by an experienced neurologist. This doctor can ask for consultations with a neurosurgeon, pediatric orthopaedic surgeon, or urologist as needed. Genetic counseling is generally available for patients. It is also important to avoid exposure to latex and latex containing products.

Patients with spina bifida are more likely to get a clubfoot (see Patient Guide to Clubfoot). Treatment usually consists of casting, stretching, and bracing. If this does not work, surgery may be needed.

In general, the medical team should monitor the strength and sensation of a patient with spina bifida throughout life to pick up problems quickly as they might arise. Also, if there are parts of the skin that don't have sensation, the family should be taught how to protect these areas so that ulcers don't develop. The family should also be given the option to join a support group such as the Spina Bifida Assocation of America (see below for a link to the website).

What surgery is needed?

The orthopaedic surgeon may perform several types of procedures. For patients with clubfoot, the surgeon may recommend lengthening certain tendons (structures that connect muscles to bone) or realign bones to make sure that the foot rests flat on the ground. Also, spine surgery may be needed if the patient is unbalanced, has difficulty sitting, or has significant scoliosis (see Patient Guide to Scoliosis).

How will my child do in the long run with spina bifida?

The answer to this question depends on the degree of neurologic damage a patient has. Some patients are completely independent. Others with severe central nervous complications (i.e. of the spinal cord) never achieve long term independence. Neonatal care has improved the infant mortality rate.

For more information, please contact the following web sites:
Spina Bifida Association of America: http://www.sbaa.org
Mount Washington Pediatric Hospital: http://www.mwph.org

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