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Spina Bifida in Children


What is spina bifida?

Spina bifida is a neural tube birth defect that prevents your child's vertebrae from forming correctly. The nerves in your child's spinal cord may be exposed, or form outside his vertebrae or skin. There are several types of spina bifida. Each type may affect your child in a different way. Your child may have nerve or brain damage. These increase his risk for learning disabilities, fluid buildup in his brain, or seizures. He may have delays in his education, self-care, and social skills. He may need to use a wheelchair, cane, or crutches. He may also have problems controlling his bladder and bowels.

What are the types of spina bifida?

  • Spina bifida occulta is the most common and mildest form of spina bifida, and may not cause symptoms. It occurs when one or more of your child's vertebrae do not form correctly.
  • Meningocele occurs when some of your child's vertebrae do not close. Part of his spinal lining and fluid form outside of the vertebrae. It may be open, or covered by skin.
  • Myelomeningocele is the most severe type. It occurs when your child's vertebrae do not close and his spinal cord forms outside the vertebrae. This mostly happens in the lower back.

What are the signs and symptoms of spina bifida?

  • A mark or patch of hair on his back, a dimple, or a lump in the skin on the lower spine
  • A bulge or sac that sticks out from the spine or base of the skull
  • A hole in the skin above the spine
  • Muscle weakness or numbness in the buttocks, legs, or feet
  • Deformed spine or feet, such as a club foot (a foot that points inward, and forms a shape like a golf club)
  • No ability to control when he urinates or has a bowel movement
  • Trouble eating or swallowing, or acid reflux
  • Seizures

How is spina bifida diagnosed?

Your healthcare provider may be able to diagnose spina bifida before your child is born. This is done through blood tests, amniotic fluid tests, and ultrasound during pregnancy. Your child's healthcare provider will examine your child just after birth to check his strength and response to touch. You or your child may also receive the following:

  • CT scan is also called a CAT scan. An x-ray machine uses a computer to take pictures of your child's spine and skull. Your child may be given contrast dye before the pictures are taken to help healthcare providers see the pictures better. Tell the healthcare provider if your child has had an allergic reaction to contrast dye.
  • MRI is a scan that may be done during your pregnancy or after your child's birth. An MRI uses a powerful magnet and computer to take pictures of the inside of your child's spine and skull. Your child may be given dye to help the pictures show up better. Tell the healthcare provider if you or your child have ever had an allergic reaction to contrast dye. Do not let your child enter the MRI room with anything metal. Metal can cause serious injury. Tell the healthcare provider if your child has any metal in or on his body.

How is spina bifida treated?

Your child may not need treatment if he has mild spina bifida. More severe forms may need the following:

  • Spinal surgery may be done to close or place his spinal cord back inside his vertebrae. Surgery will most likely happen within a day of your child's birth. Your child may also need other surgeries to repair deformed body parts, such as a club foot or severe spinal curves.
  • Ventricular shunting is surgery to place a shunt inside his brain. A shunt is a tube used to prevent spinal fluid buildup inside the skull. The shunt will run from your child's brain down to his abdomen.

What are the risks of spina bifida?

  • Your child may be at risk for infection after surgery to treat spina bifida. Surgery may cause numbness or loss of feeling in his arms or legs. The ventricular shunt may increase your child's risk of infection. The shunt could fail, and he may need another surgery to have it replaced.
  • Spina bifida that is not treated may cause deformed bones and muscles. Your child may have long-term pain, weakness, or loss of movement in his legs, even with treatment. He may also have a curved spine or bone weakness. Your child may develop a severe latex allergy or breathing problems. He may develop hydrocephalus, even with treatment. This is an increase in brain pressure from fluid buildup in your child's skull. Spina bifida may also cause permanent bowel and bladder problems, or organ damage, such as kidney failure. These conditions may be life-threatening.

How will my child's condition be managed?

Your child may need further treatment with nerve, bone, or kidney specialists. Some treatment may last for the rest of his life. Ask your healthcare provider for more information about the following:

  • Physical therapy teaches your child exercises to help improve strength, movement, and balance in his spine and joints. Physical therapy may also decrease pain.
  • Support devices include crutches, braces, a walker, or a wheelchair. He may need one or more of these if his condition is severe.
  • Medicines may be given to help prevent seizures and infections. He may also need medicine to help him urinate.

How can I care for my child?

  • Care for his bladder and bowels: Clean your child's diaper area well to avoid infection or other health problems. You may need to learn how to insert a catheter so your child can urinate. Ask your healthcare provider for more information about how to catheterize your child. You may also have to give your child an enema or stool softener so he can have regular bowel movements. This will help you predict and prepare for his bowel movements.
  • Protect your child's skin: Help him move or change positions often if he lies down or sits for long periods of time. This will help prevent sores on his skin. Check his skin often for redness or blisters.
  • Avoid all products that contain latex: Your child may become allergic to latex if he has spina bifida. Avoid latex to prevent an allergic reaction.
  • Help prevent obesity: Children with spina bifida are at risk for obesity. Feed him healthy foods, such as fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meats, and fish. Ask if he needs to be on a special diet.
  • Teach him how to care for himself: Teach him how to bathe, dress himself, and put on his braces or crutches when he is old enough to understand. Help him learn to catheterize himself and manage his bowel movements when he is between 3 and 5 years old. This will help him learn to care for himself.

What increases my child's risk for spina bifida?

  • Low folic acid levels during pregnancy
  • Another child or family member with spina bifida
  • Obesity, or diabetes before or during pregnancy
  • Hyperthermia (high body temperature) caused by a fever, or sauna or hot tub use while pregnant
  • Certain antibiotics or antiseizure medicines used during pregnancy
  • Alcohol use during pregnancy

How can spina bifida be prevented?

Take a daily multivitamin or supplement that contains 400 to 800 micrograms (mcg) of folic acid if you are a woman of childbearing age. Your healthcare provider may tell you to take up to 4000 mcg of folic acid if you have had a child with a neural tube defect.

Where can I find support and more information?

  • Spina Bifida Association
    4590 MacArthur Blvd.
    Washington , DC 20007-4226
    Phone: 1- 800 - 621-3141
    Web Address:

When should I contact my child's healthcare provider?

  • Your child has new skin redness, sores, or blisters.
  • Your child has a decreased ability to move, crawl, or walk.
  • Your child loses his appetite or vomits after he eats.
  • Your child has new or worse pain in his back or legs.
  • Your child has new or worse trouble urinating or having a bowel movement.
  • Your child's behavior changes, such as increased tiredness, clumsiness, or loss of attention.
  • You have questions or concerns about your child's condition or care.

When should I seek immediate care or call 911?

  • Your child is limp, more tired than usual, or has a weak cry.
  • Your child has redness or swelling along the path where his shunt was placed.
  • Your child has new or worse seizures.
  • Your child has a headache or nausea, or he vomits more than once.
  • Your child has vision changes.
  • Your child's head suddenly increases in size.
  • Your child has difficulty eating, swallowing, or breathing.

Care Agreement

You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's healthcare providers to decide what care you want for your child. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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