Spina Bifida in Children: Care Instructions

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Your Care Instructions

Spina bifida is a condition that begins in early pregnancy where part of the baby's spine does not form completely. That can leave part of the spinal cord uncovered. In minor cases, the spinal cord stays right where it should, and the child is fine. But when the spinal cord bulges outside of the body, it can be damaged. That makes it hard for the brain to send messages to the lower parts of the body. This can cause problems, commonly with walking and bladder control. Some babies with spina bifida also have too much fluid around their brains. This can be treated with surgery.

Spina bifida affects each child differently. Early surgery can reduce nerve damage for some children. Your doctor may use medicine to stop or prevent infection. You may start working with a physiotherapist in your baby's first few weeks to learn exercises to make the muscles stronger. As your child grows, you and your doctor will develop a treatment plan to help your child be active. Braces, wheelchairs, and other devices help many children with spina bifida to be active and independent.

Follow-up care is a key part of your child's treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if your child is having problems. It's also a good idea to know your child's test results and keep a list of the medicines your child takes.

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 his or her 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.
  • 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. Your child should avoid contact with latex.

Handling the challenges of spina bifida

  • Learn about spina bifida. This will help you figure out what you can do to help your child. Often the biggest problem for a parent is fear of the unknown.
  • 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. In raising any child, there are no guarantees. Do the best you can and know that you cannot control everything.

When should you call for help?

Call 911 anytime you think your child may need emergency care. For example, call if:

  • Your child has a seizure.
  • Your child is extremely sleepy or hard to wake up.
  • Your child has symptoms of a severe allergic reaction. These may include:
    • Sudden raised, red areas (hives) all over his or her body.
    • Swelling of the throat, mouth, lips, or tongue.
    • Trouble breathing.
    • Passing out (losing consciousness). Or your child may feel very light-headed or suddenly feel weak, confused, or restless.

Call your doctor or nurse call line now or seek immediate medical care if:

  • Your child has a fever.
  • Your child has a fever with a stiff neck or a severe headache.
  • Your child is vomiting.
  • Your child has itchy eyes, is sneezing or coughing, or has a rash.

Watch closely for changes in your child's health, and be sure to contact your doctor or nurse call line if your child has any problems.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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Current as of: July 26, 2016