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Spina Bifida - Topic Overview

How is spina bifida diagnosed?

During pregnancy, you can have a blood test (maternal serum triple or quadruple 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 it 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 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.

There are many ways you can support your child:

  • Go to all scheduled doctor visits.
  • Help your child be active, and encourage him or her to be as independent as possible.
  • Encourage your child to drink plenty of fluids and eat foods high in fiber, such as whole grains and fruits. This helps prevent constipation.
  • Check your child's skin each day for cuts, bruises, and pressure sores. Children who have little or no feeling in their legs and feet may get hurt and not know it. And that could lead to an infection.
  • Be sure to get your child's vision checked regularly. Children with spina bifida often have weak eye muscles.
  • Keep your child away from latex products if he or she has a latex allergy.
  • Watch for learning difficulties, and talk to your child's doctor or teacher if you have any concerns.
  • When your child is ready to start school, talk with teachers and other school workers. Public schools have programs for people ages 3 through 21 with special needs.

Remember that your needs are important too. Take good care of yourself so you can stay healthy and have the energy to enjoy your child. Make time for activities you like, even if it's just for a short while each day. And reach out to family, friends, and support groups when you need help.

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