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.

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.

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.

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 physical therapists 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.

• Work with your doctor and physical therapist 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 physical therapist. 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 counseling if you need help sorting out your emotions.
• Be realistic. Do the best you can and know that you cannot control everything.