What is Spina Bifida?

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Spina bifida, which literally means "cleft spine," is a birth defect in which vertebrae do not form correctly around a developing baby's spinal cord. A type of neural tube defect, spina bifida can be so mild as to be asymptomatic or so extensive a portion of the spinal cord protrudes from an opening in the spine, leading to complications such as paralysis and incontinence. Treatment may involve surgery to close up the opening in the spine as well as managing complications.

Each day in the United States approximately eight babies are born with spina bifida or a similar birth defect of the brain and spine.

Symptoms

Closed neural tube defects often are recognized early due to an abnormal tuft of hair, small dimple, or birthmark at the site of the spinal malformation. In certain types, a fluid-filled sac protruding from the spinal canal is visible. It may be covered by a thin layer of skin or no skin, leaving the abnormally developed spinal cord tissue exposed.

There are four types of spina bifida, each of which has distinct symptoms.

  • Spina Bifida Occulta: A small defect in which one or more vertebrae are malformed. It 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 cause complications 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.·It may cause few or no symptoms or can cause complete paralysis with bladder and bowel dysfunction.
  • Spina Bifida Cystica Myelomeningocele: The most serious form in which some of the spinal cord itself sticks out through the opening in the spine.·This causes partial or complete paralysis below the opening. Children affected may not be able to walk and may have bladder and bowel dysfunction.

Symptoms and complications these conditions cause include:

  • Skin issues: Sores, calluses, burns, and blisters may develop on parts of the skin where there is continuous pressure, such as on the feet, hips, and ankles.
  • Learning disabilities: Those with myelomeningocele may have difficulty paying attention and problems with language, math, and reading.
  • Bladder and bowel dysfunction: Issues include incontinence, urinary tract infections, and irregular bowel movements.
  • Paralysis: Spina bifida can cause loss of movement depending on the severity and location on the spine. Those with spina bifida higher on the spine may have paralyzed legs and need a wheelchair. Those who have it lower on the spine, near the hips, may have more use of their legs.
  • Neurological complications: Children born with myelomeningocele may have Chiari II malformation, in which the brain stem and cerebellum extend downward into the spinal canal or neck area. This can block cerebrospinal fluid, causing hydrocephalus, an abnormal buildup of cerebrospinal fluid in the brain.

Causes

Scientists are not entirely sure what causes spina bifida, although it's likely to occur due to one or more factors.

Family history: 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 a subsequent child having the condition is increased.

Although ethnicity is not a risk factor for spina bifida, it is more common among Hispanics and Caucasians than among Asians and African-Americans.

Folic acid deficiency: 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.

Antiepileptic medications: If used during pregnancy, antiepileptic medications such as valproic acid and carbamazepine can increase the risk for spina bifida.

Other risk factors in pregnancy include diabetes, obesity, and exposure to high heat from a fever or hot tub. 

Diagnosis

Spina bifida usually is diagnosed before a baby is born using blood and imaging tests that are part of routine prenatal care. A 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 typically is diagnosed in infancy depending on the type. Mild cases may be detected after birth by plain film X-ray. Doctors may also use magnetic resonance imaging (MRI) or computerized tomography (CT) scan to get clear imaging of the spinal cord and vertebrae. 

Treatment

There is no cure for spina bifida, but depending on when it is diagnosed and the type, there are treatment options that may prevent or at least alleviate complications, such as physical therapy. The opening in the spine can be closed surgically either before or after birth and this may reduce its effects on the body.

For severe cases of myelomeningocele, fetal surgery may be performed through the uterus. The goal is to prevent infection from the exposed nerves and tissues. The surgery involves opening the mother’s abdomen, similar to a c-section, and sewing shut the opening over the baby’s spinal cord. The surgery is still considered experimental, so it may not be offered everywhere, and some babies may need to have surgery after birth.

The MOMS trial, running from 2002 to 2011, evaluated the long-term outcomes of fetal surgery and found that it reduced the need for shunting and improved motor outcomes, but also found that the surgery came with a risk of preterm delivery, among other complications.

Results of a 2020 National Institutes of Health study has also found that children who underwent fetal surgery for myelomeningocele were more likely to walk independently and had fewer surgeries. 

Hydrocephalus due to spina bifida is usually treated by surgically implanting a shunt, or a hollow tube, to drain the extra fluid in the brain into the abdomen. Additional surgeries may be needed to replace the shunt if it becomes clogged or infected. 

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.

Coping

It’s normal to feel anxious or overwhelmed if your child has been diagnosed with spina bifida. Talking with other families in the same situation can be comforting and informative. Support groups can give you an idea of what to expect and recommendations for daily life, including how to prepare your living space if your child uses a wheelchair and resources for when your child enters school.

Spina bifida can cause different health issues for different people. Your doctor can help answer questions about your child’s development. With the right care, children with spina bifida will grow and thrive to reach their full potential.

A Word From Verywell

Learning your child has spina bifida can be devastating and scary, but it should be comforting to know 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.

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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