How to support your child who has severe spina bifida
Exercise promotes strength, physical development, and enhanced mobility in children with spina bifida. Even children who use a wheelchair full time benefit from exercise. Exercise helps prevent brittle bones, strengthens muscles, and reduces the risk of Reference joint Opens New Window injury.
Your health care team will provide you with exercises to do with your baby. To promote activity, you can also:
- Place your child on his or her stomach and place toys within reach to encourage the use of arms.
- Move your child's joints through their full range of motion as instructed by your doctor or Reference physical therapist Opens New Window. This helps increase flexibility and prevent injury to the joints.
- Encourage your child to take responsibility for household chores as he or she grows older.
Work on ways to strengthen your child's Reference self-esteem Opens New Window. Help your child learn about and nurture his or her unique talents. For more information, see:
Preventing Reference skin infections Opens New Window and injuries requires daily inspection of your child's skin. Children with spina bifida who have little or no feeling in their legs and feet are not able to sense pain and may injure themselves without knowing it. Some injuries may result in infections. Look for cuts that your child has not noticed, blisters and pressure sores that result from staying in one position too long, raw places where braces rub on the skin, and other signs of injury. Early care of any blisters, sores, or cuts helps prevent infection.
Take care of your child's bladder control problems to help prevent bladder infections and kidney damage. Your doctor may suggest clean intermittent catheterization (CIC). You or your child will be taught to insert a Reference catheter Opens New Window into his or her bladder at least 4 times a day. CIC lets urine flow out of the Reference urethra Opens New Window.
Help your child prevent constipation by paying close attention to his or her diet. If your child has nerve damage that contributes to constipation, encourage him or her to drink plenty of fluids and eat foods that are high in Reference fiber Opens New Window, such as whole grains and fruits. Some children need Reference enemas Opens New Window, stool softeners, or laxatives to help them pass stool.
Children with spina bifida often have an Reference allergy to latex. Help your child avoid contact with latex products, such as certain toys, balloons, and gloves. The Spina Bifida Association of America (www.sbaa.org) maintains a list of items that contain latex.
Educational needs of the child who has spina bifida
When your child reaches school age, you may need to help teachers understand your child's special needs. For example, your child may have problems with coordination that make writing difficult. Some children with severe spina bifida will have Reference learning problems Opens New Window. You can work with teachers and other school officials to create a plan to take care of your child's special needs. Sometimes this is as simple as giving the child extra time to complete school work.
In the United States, laws guarantee free early treatment programs and equal access to Reference public education for all disabled children. These laws protect a parent's right to be fully informed about educational decisions concerning his or her child. Also, the laws protect the parent's rights when he or she disagrees with any decision. Contact your state and local education departments for information about your rights to educational accommodations.
Prevention of spina bifida
To help reduce the risk of having a child who has spina bifida and other Reference neural tube defects Opens New Window, you need to get Reference plenty of folic acid. Women who are at risk (such as those who have already had a child with spina bifida) should take 4,000 mcg of Reference folic acid Opens New Window a day.Reference 2 Having enough folic acid in your diet is an important part of preventing spina bifida. To be effective, it needs to be consumed before a baby is conceived. Folic acid may be obtained from vitamin supplements and by eating foods that are rich in folic acid, such as fortified breakfast cereals and breads, spinach, and oranges. Since 1998, the United States government has required that foods made from grains and sold in the U.S. be supplemented with folic acid to help reduce the risk of spina bifida.
Before you become pregnant, talk with your doctor about the risk for having a baby with spina bifida. This is especially important if you are taking medicines for Reference epilepsy Opens New Window, such as valproic acid (Depakene or Depakote) or medicines for Reference acne Opens New Window, such as isotretinoin (such as Amnesteem, Claravis, or Sotret). These medicines are linked with a higher rate of neural tube defects and should not be taken just before and during the first 3 months of pregnancy.
Because no amount of alcohol is considered safe during pregnancy, do not drink while you are pregnant. Women who drink large amounts of alcohol during their pregnancy have an increased risk for having a child with physical and mental Reference effects caused by alcohol exposure Opens New Window.
High body temperature (hyperthermia) can cause spina bifida to develop in your fetus. So avoid exposure to excessive heat, such as saunas or soaking in a very hot bath, during the first weeks of your pregnancy. A high fever during the first weeks of pregnancy can also cause hyperthermia.
|By:||Reference Healthwise Staff||Last Revised: Reference March 21, 2011|
|Medical Review:||Reference John Pope, MD - Pediatrics
Reference Louis Pellegrino, MD - Developmental Pediatrics