When Your Child Is Born With Problems in the Spine (Spina Bifida): What to Know

Spina bifida is a neural tube birth defect (NTD). This is a problem that happens as an unborn baby's spine forms during early pregnancy.

A growing baby's spine starts as an open tube that closes over time. If your child has spina bifida, one of these things happened:

• The tube didn't close all the way.
• It closed wrong during the first month of pregnancy.

There are many types of spina bifida. Each has its own signs and symptoms.

Spina bifida occulta

• This type is also called hidden spina bifida. It may have no physical signs.
• Spina bifida occulta usually isn't harmful. Most often, the spinal cord and nerves are normal. Sometimes, though, the spinal cord can't move freely (is tethered) in the spinal column.
  • This can cause the spinal cord to be stretched.
  • This can lead to problems with the nervous system.
• This type of spina bifida may be found during a back X-ray that's done for a different reason.

Closed NTDs

• Closed NTDs are also called occult spinal dysraphism. They involve problems with the bone, fat, or other tissues around the spinal cord.
• Babies with closed NTDs often have a dimple on their lower back. They may also have a:
  • Red or brown birthmark.
  • Small lump.
  • Small bunch (tuft) of hair on the lower back.
• Often, there are no symptoms. When symptoms happen, they may include:
  • Bowel and bladder problems.
  • Paralysis. This means your child is partly unable to move or lost feeling in part of their body.

Meningocele

• A meningocele is a sac of fluid that's:
  • Pushed out of the skin.
  • Usually on the lower back.
• Often, there's no nerve damage.
• Many children have few or no symptoms. If there are symptoms, they include:
  • Bowel or bladder problems.
  • Paralysis.

Myelomeningocele

• This is the most severe type of spina bifida.
• It causes the spinal nerves, fluid, and cord to stick out at birth.
  • A sac forms on the back. This leads to nerve damage and other problems.
  • Children may have:
    • Partial or complete paralysis.
    • Trouble walking.
    • Bowel and bladder problems.
• Many children with this type also have hydrocephalus. This is too much spinal fluid around the brain.
  • The fluid can't drain like it should and starts to build up.
  • This leads to pressure and swelling.

What are the causes?

The cause of spina bifida isn't known.

What increases the risk?

The risk may be higher if:

• There's a family member with spina bifida.
• During pregnancy, the mother:
  • Didn't get enough of a type of B vitamin called folic acid.
  • Got an illness that caused a high fever.
  • Had a medical problem, like:
    • Uncontrolled diabetes.
    • Obesity.
  • Took certain medicines that prevent seizures.

What are the signs or symptoms?

Symptoms of spina bifida vary for each child and depend on the type. Some children have no symptoms. Others may have very bad paralysis and brain injury.

Symptoms may include:

• A sign you can see on your child's back, like:
  • A meningocele.
  • Spinal cord tissue that sticks out.
  • A dimple, birthmark, or unusual clump of hair.
• Partial or complete paralysis. This can cause trouble walking.
• Bowel or bladder problems.
• Trouble feeding, swallowing, or breathing.
• Upper arm stiffness or weakness.
• Learning disabilities or brain injury.
• Seizures.

How is this diagnosed?

Most often, the child is diagnosed by a test during a routine pregnancy exam before they were born. The test may be:

• An ultrasound.
• A blood test that measures levels of the protein alpha-fetoprotein (AFP). High levels may mean that your baby has spina bifida.
• Amniocentesis to screen for certain problems. This is a test of some fluid that's removed from the sac that surrounds the unborn baby.

After your child is born, they can be diagnosed based on their signs and symptoms. Your child may also have imaging tests, like:

• X-rays.
• CT scan.
• MRI.

How is this treated?

Treatment depends on the type of spina bifida your child has and how bad it is. Treatment may include:

• Surgery to correct the spinal problem.
  • This usually happens during the first few days of life. This helps to keep the baby's body working as close to normal as possible.
  • More surgeries may be done to manage problems from the disease. These include problems with the brain, hips, feet, or spine. Your child may need a tube (shunt) placed in the skull to drain extra fluid from their brain.
• Assistive devices. These help your child with moving around (mobility). These may include:
  • Crutches.
  • Braces.
  • Wheelchairs.
• Different medicines to:
  • Prevent infections linked to spina bifida.
  • Treat new problems.
• Physical therapy. This can:
  • Help muscles get stronger.
  • Reduce pain and other symptoms.
• Bladder and bowel care. This may include:
  • A small, thin tube placed in the bladder to drain pee.
  • A way to manage pooping.

Follow these instructions at home:

• Give your child medicines only as told.
• Have your child:
  • Use assistive devices.
  • Exercise as told.
• Watch your child's symptoms closely. Tell the provider about any changes in your child's health.
• Keep all follow-up visits. Your child will need to have health checks at times to see how they are doing.

Where to find more information

Centers for Disease Control and Prevention: cdc.gov/spina-bifida

Spina Bifida Association: spinabifidaassociation.org

Contact a health care provider if:

• Your child's problems with moving around get worse.
• Your child's bowel and bladder problems get worse.

Get help right away if:

• A bulge forms on a soft spot (fontanelle) on your child's head.
• Your child has a seizure.
• Your child has vision changes.