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Spina Bifida (cont.)

Treatment Overview

Treatment usually is not needed for the mild form of spina bifida and often not needed for meningocele. Treatment of the most severe form of spina bifida (myelomeningoceleClick here to see an illustration.) depends on the specific problems caused by the spinal defect and may include surgery, physical therapy, and the use of braces and other aids. Some children will have problems day to day, and others won't.

Most babies born with severe spina bifida live through childhood or longer.

A team of health professionals can help you address your child's needs. The team may include primary care doctors, nurses, surgeons, and therapists.

Prenatal surgery

Sometimes severe spina bifida can be surgically corrected before a baby is born (prenatally). The pregnant woman's uterus is entered with surgical instruments and the fetus's spine is repaired. This surgery, which is only done in specialized medical centers, is relatively new. And it is not yet known how much benefit this surgery provides in the long term. Early results suggest that this surgery may decrease the risk that the baby will need a drainage tube called a shunt to relieve pressure on the brain. The surgery may also improve the baby's ability to be active as he or she grows up. But it also poses considerable risk for the fetus and mother and can cause premature birth. And if you want to have another baby, it will have to be delivered by cesarean section.1 Talk with your doctor about the advantages and risks of this surgery.

Initial treatment

If you know that you are carrying a baby who has severe spina bifida, talk with your doctor about whether to have a cesarean section (C-section) or not. Try to have your baby in a large medical center where neonatal (new baby) surgery can be done.

For the most severe form of spina bifida, initial treatment includes surgery on the exposed nerves and tissues. Some babies who have meningocele will also need surgery. Surgery is done to prevent spinal cord infection and protect the exposed nerve tissues from injury. It is usually performed within a few days after birth. Depending on the baby's health, surgery may be delayed for up to 6 weeks. Antibiotics are often given to prevent infection from developing inside the spinal cord or brain (encephalitis or meningitis).

Most babies with severe spina bifida have increased fluid around the brain (hydrocephalus). Treatment for hydrocephalus involves surgically installing a drainage tube called a shunt that relieves pressure on the brain by draining excess fluid into the abdomen. This keeps the swelling from causing further damage to the brain. A shunt may be necessary for the rest of the child's life.

Some babies also have a condition called a Chiari malformation of the brain. In a Chiari malformation, the lower part of the brain presses on the bones of the lower part of the skull and the upper spine. Pressure on the brain can sometimes be relieved with surgery to remove some of the bone.

In the first few weeks of life, a baby with severe spina bifida may need physical therapy or occupational therapy. The therapist will move the arms and legs to help the muscles and joints stay flexible. The therapist will also teach the parents how to do these exercises. The parents will then continue to help their baby do the exercises at home.

Ongoing treatment

Nerve damage from spina bifida can lead to foot deformities, such as clubfootClick here to see an illustration., and hip deformities. Treatment of clubfoot may involve using a cast for the first few months of life, and then surgery may be done. Hip deformities may also be corrected surgically. But doctors recommend surgery only if it is likely to allow the child to walk.

Leg braces may be needed when the child is old enough to walk. These help prevent damage to the joints and help the child walk.

Curvature of the spine—scoliosis, kyphosis (hunchback), or both—may be treated with a brace. But if curvature gets worse as the child grows, it may need to be corrected surgically.

Bladder problems resulting from nerve damage can prevent complete emptying of the bladder, which can lead to kidney damage. If your child has bladder problems, you'll likely be taught how to insert a urinary catheter several times a day to ensure your child's bladder gets completely emptied. This is called clean intermittent catheterization, or CIC. Your child can insert the catheter when he or she is old enough.

Bowel problems are common in children who have severe spina bifida. Nerve damage can keep the muscles of the digestive tract from squeezing properly to move contents through the intestines and can also keep the muscle around the anus from closing tightly. Also, there may not be normal feeling (sensation) to let the child know when he or she needs to go to the bathroom or when he or she has had a bowel movement. Parents usually begin working with the doctor or nurse on managing bowel care as soon as the child starts eating solid food.

Some children have problems if scar tissue attaches the spinal cord to other tissues. The scar tissue holds the lower end of the spinal cord in place so the cord stretches as the child grows. This is called a tethered spinal cord. It can cause or increase problems with movement, bladder and bowel control, and pain. Some children will have repeat surgery to release the scar tissue and free the end of the spinal cord.

Frequent doctor's visits will be needed early on if your baby has severe spina bifida. Doctors use these visits to make sure that treatments are working and to see if the child needs more surgery.

A baby with severe spina bifida may need ongoing physical therapy to keep joints and muscles flexible and to help strengthen the muscles by exercising the arms and legs. You will be able to help your baby do many of these exercises at home.

Complications linked with spina bifida include:

  • Skin infections if sensation to injury is diminished. Prevent infections by daily examining your child's skin.
  • Urinary tract infections (UTIs) because it is hard to empty the bladder. Clean intermittent catheterization (CIC) may be needed to keep the bladder emptied. In some cases, the doctor will suggest surgery to help treat or prevent urinary tract or kidney problems. Your child's doctor may also prescribe antibiotics to help prevent UTIs or medicines to help with bladder control.
  • Constipation because of nerve injury affecting the bowel. Be certain your child drinks enough water. Your doctor may recommend that your child also take stool softeners.
  • Latex allergy, which is common in children who have spina bifida. Latex is a natural rubber product that is used to make objects such as toys and health care supplies. Do not allow your child to come into contact with items that contain latex.
  • Problems with the shunt that may be used to drain excess fluid from the head.

Treatment if the condition gets worse

Other problems can occur with severe spina bifida and may get worse as the child grows:

  • Severe curvature of the spine—scoliosis or kyphosis (hunchback)—may need to be corrected with surgery.
  • Depending on the location of the nerve damage, walking may become increasingly difficult, and the child may eventually require a wheelchair for mobility.

Sometimes spina bifida causes people to have an abnormal walking pattern (gait). It can lead to arthritis of the hips or knees, and treatment may be needed. For more information, see the topic Osteoarthritis.

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