When You're Born With Part of the Spine in a Pouch Outside the Body (Myelomeningocele): What to Know

Myelomeningocele is a congenital condition, which means it's a problem a person is born with. It causes the spinal nerves, fluid, and cord to stick out of the back at birth. This forms a small pouch on the baby's back.

Myelomeningocele is a type of spina bifida. This is when an unborn baby's spinal column and spinal bones (vertebrae) don't form right in the uterus.

What are the causes?

The exact cause isn't known.

When the spinal cord is forming, it normally starts out shaped like an open tube. This tube slowly closes from top to bottom. Myelomeningocele happens when this tube doesn't close fully.

What increases the risk?

• Being born to a mother who didn't get enough folic acid during pregnancy.
• Having siblings with myelomeningocele.
• Being born to a mother who was taking certain medicines, like valproic acid.

What are the signs or symptoms?

A common symptom is a small pouch of fluid that sticks out of the back at birth. This pouch also has the spinal cord or spinal nerves in it. Other symptoms depend on where in the back the problem is. They may include:

• Loss of bladder or bowel control. This can cause pee or poop to leak. Sometimes, the child has trouble pooping (constipation).
• Lack of feeling in the area of the body below the pouch of fluid.
• Paralysis. This means not being able to use the legs in part or at all. This can cause problems with growth and development. These include not being able to crawl or walk.
• Joint problems. These are most often seen in the hips, knees, and feet. Joint problems can lead to joints that:
  • Are shaped differently than usual.
  • Don't work well.

How is this diagnosed?

Myelomeningocele is often diagnosed before birth. It's confirmed using blood tests and an ultrasound of the unborn baby.

How is this treated?

There's no cure for myelomeningocele, but there are treatments for the problems it causes. Usually, a team of health care providers is needed to manage the problems. Treatments include:

• Surgery to close the opening of the spinal cord. This helps prevent infections. It's often the first treatment to be done.
• Corrective surgery and bracing for leg problems.
• Medicines, surgery, and having a tube placed in the bladder to help empty pee (bladder catheterization).
• Treating constipation and poop leakage by:
  • Putting fluid into the butt (enema).
  • Using medicines.
  • Changing diet.
• Surgery to place a tube called a ventriculoperitoneal (VP) shunt from the brain to the belly.
  • This is sometimes needed because myelomeningocele can be linked to:
    • Hydrocephalus. This is too much fluid in the brain.
    • Chiari malformation. This is a problem with how parts of the brain formed.
  • The tube prevents fluid and pressure from building up in the skull. The buildup can happen when spinal fluid doesn't drain normally.

A team of providers and experts will closely watch your child's health and growth over time.

Follow these instructions at home:

• Follow all instructions as given by the providers. These may include how to treat your child for problems in the:
  • Bladder.
  • Bowels.
  • 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 they lose feeling in the legs or butt.
• Take good care of your child's skin. Watch for redness or sores.
• Give your child medicines only as told.
• Look to friends and family for support if needed. Support groups and counseling can help you work through any stress that comes from caring for your child.
• Keep all follow-up visits. Your child will need regular kidney and bladder testing.

Where to find more information

• Spina Bifida Association: spinabifidaassociation.org

Contact a health care provider if:

• Your child is having more trouble with peeing or pooping.
• Your child has new leg weakness or numbness.
• Your child gets new headaches.

Get help right away if:

• Your child shows signs of more pressure buildup at the base of the brain. Signs include:
  • Making squeaking sounds when breathing in.
  • Working hard to breathe when breathing in.
  • Choking on food.
  • Hoarseness or lack of a voice.
  • Shallow breathing or periods when breathing stops.
• Your child hasn't had seizures before and has one of any length of time.
• Your child has a VP shunt and:
  • Has a seizure of any length of time.
  • Starts getting headaches.
  • Loses eyesight.

These symptoms may be an emergency. Call 911 right away.

• Do not wait to see if the symptoms will go away.
• Do not drive yourself to the hospital.