Condition Basics

What is spina bifida?

Spina bifida is a type of birth defect called a neural tube defect. It occurs when the bones of the spine (vertebrae) don't form properly around part of the baby's spinal cord. Spina bifida can be mild or severe.

• The mild form is the most common. It usually doesn't cause problems or need treatment. You can't see the defect, but some people may have a dimple, birthmark, or hairy patch on their back. Most people with this form don't know they have it until they get a back X-ray for another reason.
• A rare and more severe form is meningocele (say "muh-NIN-juh-seel"). In this form, fluid leaks out of the spine and pushes against the skin. You may see a bulge in the skin. In many cases, there are no other symptoms.
• The most rare and severe form is myelomeningocele (say "my-uh-loh-muh-NIN-juh-seel"). It's what most people mean when they say "spina bifida." Part of the spinal nerves push out of the spinal canal, and the nerves are often damaged. You may see a bulge in the skin. In some babies, the skin is open and the nerves are exposed.

What causes it?

The exact cause of this birth defect isn't known. Experts think that genes and the environment are involved. For example, someone who's had one child with spina bifida is more likely to have another child with the disease. Having low levels of folic acid (folate) in your blood, obesity, or diabetes also makes a person more likely to have a child with spina bifida.

What are the symptoms?

Your child's symptoms will depend on how severe the defect is. Most children with the mild form of spina bifida don't have any problems from it.

In many cases, children with meningocele don't have any symptoms.

Children with the most severe form of spina bifida often have spine and brain issues that cause serious problems. They may have:

• Little or no feeling in their legs, feet, or arms, so they may not be able to move those parts of the body.
• Bladder or bowel problems, such as leaking urine or having a hard time passing stools.
• Fluid buildup in the brain (hydrocephalus). Even when it is treated, this may cause seizures, learning problems, or vision problems.
• A curve in their spine, such as scoliosis.

How is it diagnosed?

During pregnancy, you can have a blood test (quad screen) and an ultrasound of the developing baby. These tests check for signs of spina bifida and other problems. If test results suggest a birth defect, you can choose to have an amniocentesis. This test helps confirm if the baby has spina bifida.

After birth, a doctor can usually tell if a baby has spina bifida by how the baby's back looks. If spina bifida is suspected, the doctor may do an X-ray, an MRI, or a CT scan to see if the defect is mild or severe.

How is spina bifida treated?

Most children with the mild form of spina bifida don't need treatment. Children with meningocele may not need treatment either. But children with the most severe form usually need surgery. Sometimes surgery to correct severe spina bifida can be done before a baby is born.

A child who has hydrocephalus will need surgery to put in a drainage tube called a shunt. It relieves pressure on the brain by draining excess fluid into the belly. This keeps the swelling from causing more damage to the brain.

Experts such as physiotherapists and occupational therapists work with children who have severe spina bifida. The work starts soon after the child's birth. These therapists can teach parents and caregivers how to do exercises and activities with the child.

Some children may need a brace, a wheelchair, or other aids. Children with bladder control problems may need help using a catheter each day to prevent infection and kidney damage. To help prevent bowel problems, parents usually begin working with the doctor or nurse on managing bowel care as soon as the child starts eating solid food. As children with severe spina bifida grow, other treatments and surgeries may be needed to manage problems that arise.

How can you care for your child at home?

• Work with your doctor and physiotherapist to help your child get strong and learn to control movements better.
• Place your child on their stomach and place toys within reach.
• Move your child's joints through their full range of motion as taught by your doctor or physiotherapist. This will make the muscles stronger and prevent injury to the joints.
• Prevent skin infections by looking for cuts, blisters, and sore spots.
• Help your child avoid contact with latex. Children with spina bifida often are allergic to latex. Latex can be in medical gloves and things such as bandages, balloons, and pacifiers. Watch for signs of a reaction, such as sneezing, coughing, itchy eyes, and a rash.

Handling the challenges of spina bifida

• Learn about spina bifida. This will help you figure out how you can help your child.
• Take care of yourself. Get enough rest, eat well, and exercise.
• Help each other. The entire family is affected when a child has spina bifida. You can help family members with their fears and concerns.
• Consider joining a support group. Sharing your experiences with other parents who face similar challenges may help you feel less overwhelmed. Seek counselling if you need help sorting out your emotions.
• Be realistic. Do the best you can and know that you cannot control everything.

How can you help prevent spina bifida?

Having healthy habits before and during pregnancy can help prevent spina bifida.

• Get plenty of folic acid each day, both before you get pregnant and during pregnancy. All foods made from grains and sold in Canada have folic acid added. Foods rich in folic acid include fortified breakfast cereals, breads, tortillas, and rice. Your doctor or midwife may recommend that you also take a daily vitamin with folic acid or a folic acid supplement.
• If you take medicine for seizures or acne, talk with your doctor or midwife before you get pregnant. Some of these medicines can cause birth defects.
• Avoid alcohol while you are pregnant. Any amount of alcohol may affect your baby's health. Talk to your doctor or midwife if you need help quitting or cutting back.
• Don't get too hot in the first weeks of pregnancy. For example, avoid using a sauna or hot tub. Or talk to your doctor or midwife before using them. And treat a high fever right away. High body temperature could raise your baby's risk for spina bifida.
• Try to maintain a healthy weight before and during pregnancy. Talk with your doctor or midwife about what weight is healthiest for you.
• If you have diabetes, it's important to talk to your doctor. You may need to fine-tune your diabetes care before you get pregnant to make sure that both you and your baby stay healthy.