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Spina Bifida

What is spina bifida?

Spina bifida is a birth defect that causes problems with the spine, spinal cord, and the surrounding nerves. It can cause part of the spinal cord and areas around it to develop outside of the body. This problem can happen anywhere along the spine.

Spina bifida is a type of neural tube defect. Neural tube defects affect 7 out of 10,000 live births in the U.S.

What are the types of spina bifida?

Illustration of three different degrees of spina bifida
Click Image to Enlarge

Spina bifida occulta

This is a mild form of spina bifida. The spinal cord and the surrounding structures stay inside the baby. But lower spine doesn’t form as it should. The child may have a hairy patch, dimple, or birthmark over the area of the defect. Other children may not have any visual problems in the area.

Meningocele

This is a moderate form of spina bifida. The fluid-filled sac that surrounds the spinal cord is outside of the body in the spine area. The sac does not contain the spinal cord or nerves.

Myelomeningocele

This is a severe form of spina bifida. The spinal cord and nerves develop outside the body. They are contained in a fluid-filled sac that is outside of the body in the spine area. A baby with this problem usually has weakness and loss of sensation below the defect. The baby may have problems with bowel and bladder function. Most with myelomeningocele will also have hydrocephalus. This is a condition that causes the fluid inside the head to build up. The buildup puts pressure on the inside of the head. The skull bones expand to a size that’s larger than normal.

How does spina bifida happen?

During pregnancy, the brain and spine begin as a flat plate of cells. This plate rolls into a tube, called the neural tube. The tube is completely formed 28 to 32 days after conception. If all or part of the neural tube fails to close, this leaves an opening. The opening is called an open neural tube defect. The opening in the tube may be left exposed or covered with bone or skin.

The neural tube in a child with spina bifida doesn’t close at some point along the spine.

Spina bifida is one of the most common types of open neural tube defects. Another type is anencephaly. This type happens when the neural tube doesn’t close at the base of the skull. A much more rare type is encephalocele. In this defect, part of the brain or its coverings extend through the skull.

What causes spinal bifida?

In most cases, a child with a neural tube defect has no family history of this problem.

Neural tube defects are caused by a combination of genes passed on from both parents and environmental factors. Some of these factors include obesity, uncontrolled diabetes in the mother, and certain prescription medicines.

Once a child with a neural tube defect has been born in the family, the chance that this problem will happen in another child rises to 1 in 25. The type of neural tube defect can differ the second time. For example, one baby could be born with anencephaly, and a second baby could have spina bifida instead.

What are the symptoms of spina bifida?

The following are the most common symptoms of spina bifida. But symptoms may be slightly different for each baby.

  • Your baby’s back looks different from normal. This might be a small, hairy patch, dimple, or birthmark along the spine. Or it might be a pouch-like structure (sac) in the spine area.

  • Your baby has constipation or incontinence.

  • Your baby isn’t able to feel anything below the place on the spine where the sac is. This is especially true for babies born with a meningocele or myelomeningocele.

  • Your baby can’t move his or her legs (paralysis).

The baby may also have other problems. These include:

  • Increased fluid and pressure in the head area (hydrocephalus). This happens in about 7 to 9 out of 10 cases.

  • Heart problems

  • Bone problems

  • Lower than normal level of intelligence

The symptoms of spina bifida may look like other health conditions. Make sure your child sees his or her healthcare provider for a diagnosis.

How is spina bifida diagnosed?

You may need tests while you are pregnant to look for spina bifida in your developing baby. The tests include:

Blood tests

The American College of Obstetrics and Gynecology recommends that a blood test be offered to all pregnant women who have not had a child with a neural tube defect and who don’t have a family history of these. The blood test is done between 16 and 18 weeks of pregnancy. It measures levels of alpha-fetoprotein (AFP) and other things in your blood. The test can tell if you are at increased risk for an open neural tube defect. AFP is a protein normally made by the fetus. If a fetus has an open neural tube defect, the AFP level in the mother's blood usually will be higher than normal. The test doesn’t say for certain that a fetus has this problem, but it shows which pregnancies are at greater risk. If your results show you are at risk, you may need more testing.

Prenatal ultrasound (sonography)

This imaging test uses high-frequency sound waves and a computer to make images of blood vessels, tissues, and organs. Ultrasounds let healthcare providers see the internal organs as they function. They also show blood flow through blood vessels. Prenatal ultrasound may be able to find an open neural tube defect. Your provider may also use ultrasound to look at other organs and body systems of the fetus.

Amniocentesis

This test looks at a small sample of the fluid that surrounds the fetus. The healthcare provider uses a long, thin needle to reach the amniotic sac. He or she takes the sample of fluid and checks it for AFP. The test may not be able to find small or closed defects.

Preventing neural tube defects

The neural tube closes 28 to 32 days after conception, before many women are aware that they are pregnant. Normal development of the brain and spinal cord may be affected during these first 3 to 8 weeks of pregnancy by:

  • Genetic problems

  • Being around hazardous chemicals and other substances

  • Not getting proper vitamins such as folic acid and other nutrients in the diet

  • Infection

  • Using prescription medicine or alcohol

Researchers have found that a woman who gets enough folic acid (vitamin B-9) can help lower the risk for neural tube defects. Folic acid is found in some leafy green vegetables, nuts, beans, citrus fruits, and fortified breakfast cereals.

The American College of Medical Genetics and the CDC recommend that all women of childbearing age take a multivitamin that has folic acid. Folic acid is in prenatal vitamins. Getting this vitamin early in pregnancy is most important.

If you have had a child with a neural tube defect, your healthcare provider may recommend taking a larger amount of folic acid before your next pregnancy. Your provider may tell you to take this extra amount for 1 to 2 months before conception and then through the first trimester.

Other risk factors for neural tube defects include:

  • The mother’s age. Spina bifida is more common in teenage mothers.

  • History of miscarriage

  • Birth order. First-born infants are at higher risk.

  • Socioeconomic status. Children born into lower socioeconomic families are at higher risk of developing spina bifida. Researchers think that poor diet may be a factor.

Living with spina bifida

Treatment will depend on your baby’s symptoms, age, and general health. It will also depend on how severe the condition is.

The primary goals of managing spina bifida are to prevent infection and to protect the spinal cord and nerves that are exposed outside of the body.

You may need to have a cesarean section. This is often done to lower the risk for damage to the spinal cord that may occur during a vaginal delivery. Babies born with a meningocele or a myelomeningocele usually need to stay in the neonatal intensive care unit (NICU). Your child may need surgery to close the defect. Surgery can help manage the problems, but it can’t restore muscle function or sensation to a normal state. Your child may need surgery to:

  • Repair and close the defect

  • Treat hydrocephalus

  • Treat bone (orthopedic) problems. Bone problems may include curvature in the back, hip dislocation, ankle and foot deformities, and contracted muscles. Babies and children with spina bifida are also at risk of breaking bones because their bones may be weaker than normal.

  • Repair bowel and bladder problems. Surgery can help with elimination, incontinence, and constipation, or when the bladder does not empty completely.

After surgery, you will get instructions on caring for your baby at home. You may be told how to:

  • Look at your baby’s skin, especially over bony areas such as the elbows, buttocks, back of the thighs, heel, and foot areas. You may need to change your baby's position often to prevent pressure sores.

  • Help your baby with bowel and bladder function

  • Feed your baby and monitor your baby's nutrition

  • Help your baby move and encourage him or her to be active

  • Help with your baby’s growth and development

Not all babies need surgery to repair spina bifida. Instead a baby may need:

  • Rehabilitation

  • Positioning aids that help the child sit, lie, or stand

  • Braces and splints that help prevent deformity. These also give support or protection to areas of the body.

  • Medicines

Latex precautions

Babies with spina bifida are at high risk of developing a latex allergy. This because they are exposed to latex during the many medical and surgical procedures they need. Your baby’s healthcare team will do their best to limit how much latex your baby is exposed to. Your baby's healthcare providers can help you find out which products that contain latex and also find products that are latex-free.

Lifelong concerns

Spina bifida is a lifelong condition that has no cure. Your child’s healthcare providers will work to prevent deformities or keep them to a minimum. They will also work to help your child make the most of his or her capabilities. You can help your child strengthen his or her self-esteem and be as independent as possible. Physical and occupational rehabilitation, plus extra support in school can help a child function as well as possible.

The full extent of spina bifida is usually not completely known right after birth. It can become clearer as the child grows and develops.

Future pregnancies

Your healthcare provider may recommend genetic counseling. You can discuss with a counselor the risk of a neural tube defect in a future pregnancy. Also talk with your provider about getting a prescription for folic acid to lower the risk for another open neural tube defect.