Encephaloceles

If your child has an encephalocele, meaning brain tissue is out of place, our experienced team at Advocate Children’s Hospital can help. We have the skilled pediatric neurosurgeons your child needs to carefully fix the problem and protect brain function through treatment for enecephalocele.

We also work with specialists who treat other medical needs and provide complete follow-up care and support.

What is an encephalocele?

To define encephalocele, we start with the fact that some of your child’s brain tissue and its protective covering stick out of the skull. The tissue pushes out because a skull section never formed properly – usually the top, the back or between the forehead and nose.

Usually, the tissue forms a large sac, one easily noticeable at birth. But sometimes the amount of tissue involved is smaller, so the encephalocele doesn’t get diagnosed right away.

Children with an encephalocele may also have issues with how the brain and the bones in the skull and face develop.

What causes an encephalocele?

We don't fully understand what causes an encephalocele. We know that the neural tube (the fetal structure that becomes the brain and spine) doesn’t always develop as it should. These glitches with the neural tube can lead to a number of neurological conditions that sometimes run in families, including encephaloceles.

Other issues related to neural tube development include:

• Anencephaly, missing portions of the brain and skull
• Chiari malformation, or brain tissue pressing into an opening reserved for the spinal cord
• Spina bifida, or incomplete closure of the spinal covering

Encephalocele symptoms

In addition to the external tissue, children with an encephalocele may experience a range of neurological effects. Those effects depend on where the tissue comes out, the area of the brain involved and how the brain otherwise formed.

Symptoms related to an encephalocele include:

• Challenges with physical growth and mental development
• Cognitive problems
• Paralysis of arms and legs
• Problems with the pituitary gland
• Seizures
• Too much fluid in the brain (hydrocephalus)
• Uncoordinated muscle movement
• Unusually small head
• Vision problems

Encephalocele diagnosis

Sometimes doctors spot an encephalocele during a routine ultrasound during pregnancy, with a fetal MRI confirming the diagnosis. Otherwise, the condition is usually noticeable at birth. Our doctors take scans of your child’s skull and brain to get further details.

Encephalocele treatment

Experienced specialists from our neurosurgery program guide your child’s care and treatment for encephalocele, tailoring treatment to your child's particular needs. The goal is to carefully move brain tissue back inside the skull and close the opening, while also draining any extra fluid. Often, we can complete these complex surgeries without disturbing brain function any further.

Depending on the case, our neurosurgeons often partner with other Advocate Children’s Hospital specialists including those in plastic surgery, ophthalmology and endocrinology. We also connect your family with resources for continued care and support.