Myelomeningocele

What are the causes?

What increases the risk?

• Children whose mothers did not get enough folic acid during pregnancy.
• Children who have siblings with myelomeningocele.

What are the signs or symptoms?

• Loss of bladder or bowel control. This can cause urine or stool to leak. Sometimes the child has difficulty passing stool (constipation).
• Lack of feeling in the area of the body below the fluid-filled sac.
• Partial or complete inability to move the legs (paralysis). This can cause problems in growth and development, including inability to crawl or walk.
• Joint problems. This is most noticeable in the hips, knees, and feet. Joint issues can cause deformities or problems with normal function of the joints.

How is this diagnosed?

How is this treated?

• Surgery to close the opening of the spinal cord in order to prevent infections from developing. This is often the first treatment to be done.
• Surgery to place a tube called a ventriculoperitoneal (VP) shunt from the brain to the abdomen. This tube prevents fluid and pressure from building up in the skull (hydrocephalus) due to a lack of normal drainage of spinal fluid.
• Corrective surgery and bracing for leg problems.
• Medicines, surgery, and the placement of a tube in the bladder to help empty urine (bladder catheterization).
• Putting fluid into the rectum (enema) to help with constipation and stool leakage. Medicines and diet can also be used to treat this problem.
• Medicines to treat muscle jerking or shaking (seizures).

Follow these instructions at home:

• Follow all instructions as given by your child's health care providers. These may include instructions for treating your child for problems in the bladder, the bowels, and bones and joints.
• Pay careful attention to water temperature when bathing your child. Watch your child around other heat sources. This is important because your child may not react to high heat if he or she loses feeling in the legs or buttocks.
• Take good care of your child's skin. Watch for redness or sores.
• Give your child over-the-counter and prescription medicines only as told by the health care provider.
• Look to friends and family for support if needed. Support groups and counseling are useful in helping you work through any stress that arises from caring for your child.
• Keep all follow-up visits as told by your child's health care provider. This is important. Your child will need regular kidney and bladder testing.

Contact a health care provider if:

• You suspect that your child is having a seizure. Look for:
  • Rhythmic jerking or twitching of the arms or legs.
  • Sudden falls that have no cause.
  • Lack of response, or having a dazed look, for brief periods.
  • Staring or blinking rapidly.
  • Unusual sleepiness or irritability when waking.

Get help right away if:

• Your child shows signs of increased pressure buildup at the base of the brain. These signs include:
  • Squeaky, labored inhaling.
  • Choking on food.
  • Hoarseness or lack of a voice.
  • Shallow breathing or periods when breathing stops.
• Your child has a history of seizures, and he or she:
  • Has a seizure that lasts more than 5 minutes.
  • Has a seizure that is unusual in some way.
  • Has breathing trouble after a seizure.
• Your child does not have a history of seizures and experiences a seizure of any length of time.
• Your child has a VP shunt and experiences a seizure of any length.

Summary

• Myelomeningocele is a birth defect caused by incomplete closure of the child's spinal column when it is forming in the womb.
• Children with this condition have a fluid-filled sac that sticks out of the back at birth.
• There is no cure for myelomeningocele, but there are many treatments available for the problems it causes.
• A team of health care providers and specialists will monitor your child's health and growth over time.