An Overview of Spina Bifida

Symptoms, Diagnosis, and Treatment

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One of the most common permanently disabling birth defects in the United States, spina bifida literally means a cleft or split spine. Each day, approximately eight babies are born with spina bifida in America.

Spina bifida is a neural tube defect where the spine's vertebrae do not form correctly around the baby's spinal cord. It can range from mild to severe in its impact. In mild cases, no treatment is necessary; in severe cases, there is significant nerve damage.

The four types of spina bifida are:​

  • Spina bifida occulta: A small defect that usually causes mild or no symptoms.
  • Closed neural tube defects: A diverse group of defects in which the spinal cord is marked by malformations of fat, bone, or meninges that causes symptoms ranging from none to incomplete paralysis with urinary and bowel dysfunction.
  • Spina bifida cystica meningocele: A more difficult case that causes some of the membrane surrounding the spinal cord to stick out through the opening.
  • Spina bifida cystica myelomeningocele: The most serious form in which some of the spinal cord itself sticks out through the opening in the spine.

Children born with spina bifida may have other nervous system disorders like hydrocephalus or Chiari malformation.

Causes

To date, scientists are unsure what exactly causes spina bifida It is believed to be caused by a mix of genetic, environmental factors, and nutritional factors. Studies have linked an insufficient intake of folic acid—a common B vitamin—during pregnancy as a key factor.

To prevent spina bifida and other neural tube defects, many foods are fortified with folic acid and pregnant women are encouraged to take supplements including folic acid prior to pregnancy. 

If you are pregnant or planning to become pregnant, talk to your doctor about taking prenatal vitamins, including folic acid.

Risk Factors

In the United States, spina bifida occurs more frequently among Hispanics and Caucasians and less commonly in Asians and African-Americans. Ninety-five percent of babies born with spina bifida have no family history of it. However, if a mother has a child with spina bifida, the risk of it happening again in a subsequent pregnancy is increased.

Diagnosis

A screening blood test called an alpha-fetoprotein test (AFP) is done using the pregnant mother's blood when she is about 16 to 18 weeks into the pregnancy. If the results are abnormal, a detailed (Level II) ultrasound is done which can show the presence of spina bifida. An amniocentesis (sampling of the amniotic fluid in the womb) may be done to recheck the AFP level.

If spina bifida is not detected prior to birth, it is typically diagnosed in infancy depending on the type. Closed neural tube defects are often recognized early due to an abnormal tuft of hair, small dimple, or birthmark at the site of the spinal malformation. Meningocele and myelomeningocele types generally involve a fluid-filled sac protruding from the spinal canal that is visible. It may be covered by a thin layer of skin or no skin, leaving the abnormally developed spinal cord tissue exposed.

Treatment

There is no complete cure for spina bifida. The opening in the spine can be closed surgically either before or after birth and this may reduce its effects on the body.

Since spina bifida causes injury to the spinal cord, continual treatment is often needed to manage symptoms like difficulty standing, walking, or urinating. Some people will be able to walk with crutches or leg braces; others may need a wheelchair to get around throughout their lives. Children and adults with myelomeningocele will have the most medical complications and need the most intensive medical care.

The outlook for children with spina bifida has changed dramatically over the years. Recent developments have shown that those with spina bifida can live mostly normal lives. Ninety percent of babies born with the condition survive into adulthood, 80% have normal intelligence, and 75% are able to play sports and participate in other activities.

A Word From Verywell

While finding out your child has spina bifida can be overwhelming, recent developments have made managing the condition possible. With the right support, information, and guidance, you and your child will likely live a better life than you could have imagined when you received the diagnosis. 

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  1. Spina Bifida Association. What is spina bifida? SBA National Resource Center.

  2. National Institute of Neurological Disorders and Stroke. Spina bifida fact sheet.

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  4. Spina Bifida Association. Genetics and spina bifida. SBA National Resource Center.

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