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Spina Bifida in Children

WHAT YOU NEED TO KNOW:

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 the vertebrae or skin. Spina bifida has several types. Each type may affect your child in a different way. Spina bifida may cause nerve or brain damage. These increase his or her risk for learning disabilities, fluid buildup in the brain, or seizures. He or she may have delays in education, self-care, and social skills. He or she may need to use a wheelchair, cane, or crutches. He or she may also have problems controlling his or her bladder and bowels.

DISCHARGE INSTRUCTIONS:

Call your local emergency number (911 in the US) if:

  • Your child has new or worse seizures.
  • Your child has trouble eating, swallowing, or breathing.

Seek immediate care if:

  • Your child is limp, more tired than usual, or has a weak cry.
  • Your child has redness or swelling along the path where a shunt was placed.
  • Your child has a headache or nausea, or he or she vomits more than 1 time.
  • Your child has vision changes.
  • Your child's head suddenly gets bigger.

Call your child's doctor if:

  • Your child has new skin redness, sores, or blisters.
  • Your child is less able to move, crawl, or walk.
  • Your child loses his or her appetite or vomits after he or she eats.
  • Your child has new or worse pain in his or her 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.

Medicines:

Your child may need any of the following:

  • Antiseizure medicine helps control and prevent seizures.
  • Anticholinergics help your child urinate.
  • Give your child's medicine as directed. Contact your child's healthcare provider if you think the medicine is not working as expected. Tell him or her if your child is allergic to any medicine. Keep a current list of the medicines, vitamins, and herbs your child takes. Include the amounts, and when, how, and why they are taken. Bring the list or the medicines in their containers to follow-up visits. Carry your child's medicine list with you in case of an emergency.

Physical therapy

may be used to help improve strength, movement, and balance in your child's spine and joints. Physical therapy may also decrease pain.

Support devices

include crutches, a cane, braces, a walker, or a wheelchair. Ask for more information about how to use these devices.

Care for your child:

  • Care for your child's 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 for more information about how to catheterize your child. You may also have to give your child an enema or stool softener so he or she can have regular bowel movements. This will help you predict and prepare for bowel movements.
  • Protect your child's skin. Help your child move or change positions often if he or she lies down or sits for long periods of time. This will help prevent skin sores. Check your child's skin often for redness or blisters.
  • Avoid all products that contain latex. Your child may become allergic to latex. Avoid latex to prevent an allergic reaction.
  • Help prevent obesity. Children with spina bifida are at risk for obesity. Feed your child healthy foods, such as fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meats, and fish. Ask if he or she needs to be on a special diet.
    Healthy Foods
  • Teach your child how to care for himself or herself. Teach him or her how to bathe, get dressed, and put on braces when he or she is old enough to understand. Help him or her learn to self-catheterize and manage bowel movements when he or she is between 3 and 5 years old.

Prevent spina bifida:

Talk to your healthcare provider if you are a woman of childbearing age and you want to have children. The following are general guidelines to help prevent spina bifida:

  • Take a daily multivitamin or supplement that contains 400 to 800 micrograms (mcg) of folic acid. Your provider may tell you to take up to 4,000 mcg of folic acid if you have had a child with a neural tube defect. It is best to start taking folic acid before you become pregnant.
  • Do not drink alcohol during your pregnancy. No amount of alcohol during pregnancy is safe. If possible, stop drinking before you become pregnant. Talk to your provider if you need help stopping.
  • Reach or maintain a healthy weight. Ask your provider what a healthy weight is for you. He or she can help you create a safe weight loss plan, if needed. Try to reach a healthy weight before you become pregnant. Your provider will tell you how much weight to gain during your pregnancy. He or she can also help you create healthy meal and exercise plans to use during pregnancy.
  • Talk to your provider before you take medicines during pregnancy. Some medicines used during pregnancy increase the risk for spina bifida.
  • Do not sit in a sauna or hot tub while you are pregnant. A high body temperature during pregnancy increases the risk for spina bifida.

Follow up with your child's doctor as directed:

Your child may need further treatment with other specialists such as a neurologist, an orthopedic surgeon, or a urologist. Write down your questions so you remember to ask them during your child's visits.

For more information:

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

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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.

Learn more about Spina Bifida in Children (Discharge Care)

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Further information

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