What is encephalocele?
Early in pregnancy, a fetus develops a narrow channel called a neural tube that folds and closes to form the brain and spinal cord. Encephalocele occurs when the neural tube does not fully close and a combination of brain matter, fluids and membranes protrude from the skull. This is usually seen in the back of the head or near the nose. This is a very rare disease, with around 340 babies born in the U.S. with the disorder each year.
What are the causes of encephalocele?
The exact cause of encephalocele is unknown, but the lack of a B vitamin called folic acid during pregnancy could be a contributing factor.
How is encephalocele diagnosed?
Encephalocele can be diagnosed during pregnancy, or it becomes clear upon birth. However, there are times when the protrusion is small enough that it goes undetected for some time.
What are the symptoms of encephalocele?
Symptoms your child may encounter along with encephalocele include:
- An accumulation of cerebrospinal fluid in the brain (hydrocephalus)
- An abnormally small head for the child’s age and sex (microcephaly)
- Neurologic problems
- Possible paralysis of limbs
- Vision problems
- Intellectual disability
- Stunted growth
- Developmental delays
Infants born with encephalocele will require care from a hospital close to home, for safety and for practical reasons. Your child will need to stay in the hospital after surgery, and there will be multiple follow-up visits as they grow.
What are the treatment options for encephalocele?
A child with encephalocele will need surgery to place the protruding matter back into the skull and close the opening. The length of surgery and recovery will depend on the case and location of the protrusion. Multiple surgeries may be needed. CHOC will have a team of specialists including neurosurgeons, nurses, plastic surgeons and others, working diligently to treat your child.