Understanding Encephalocele

How to say it

ehn-SEHF-ah-loh-SEEL

What causes encephalocele?

Doctors aren’t sure why encephaloceles form. It's likely due to a mix of genetic and environmental factors. The condition can run in families. It may be caused by certain infections in a mother during pregnancy. In some cases, it may be caused by a tumor or trauma to the skull.

Symptoms of encephalocele

Doctors may find an encephalocele at birth. Or it may be spotted before birth with an imaging test called an ultrasound. The condition can cause symptoms such as:

• No strength in the arms and the legs (paralysis).

• A very small head.

• Lack of muscle coordination.

• Developmental delay.

• Trouble seeing.

• Delayed growth.

• Seizures.

Your child’s symptoms may vary. They often depend on the size and location of the sac, as well as the type of material in it. Symptoms tend to be worse if the sac contains vital parts of the brain.

Treatment for encephalocele

Your child will need surgery. It's the only treatment for this condition. During surgery, a doctor uses special tools to put the contents of the sac back into the skull, if possible. The doctor then closes the hole in the skull.

Surgery may be done shortly after birth or several months to years later. It depends on your child’s condition. In some cases, your child may need more than one surgery. Plastic surgery may be advised if your child has skin or face deformities.

Possible complications of encephalocele

Your child may problems from an encephalocele. Problems include:

• A buildup of CSF in the brain.

• Leaking of CSF.

• Delays in development and growth.

• Problems with intellect.

• An infection in the brain or spinal cord.

When to call the doctor

Contact your child’s doctor right away if your child has:

• A fever of 100.4°F (38°C) or higher, or as directed by the doctor.

• Symptoms that don’t get better or that get worse.

• New symptoms.