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An encephalocele is a rare birth defect in which the tissue covering the brain, and a portion of the brain itself, protrude through openings in the skull. It may be accompanied by other craniofacial defects.
Encephaloceles can occur anywhere in the skull — involving the top, back or sides of the head or the forehead, nose and eye area. Their severity varies, depending on their size, location and what parts of head and face are involved.
The exact cause of encephalocele is unknown. It a type of neural tube defect, meaning that the neural tube — a narrow channel that should close during early gestation to form the brain and spinal cord — does not close properly.
Yes, an encephalocele can be treated surgically, ideally during infancy when the skull is still very flexible. The operation involves removing any nonfunctioning brain tissue and cerebrospinal fluid, moving functional brain tissue carefully back into the skull and relieving any fluid pressure in the head. Children whose encephaloceles involve a large amount of brain tissue are at most risk for complications.
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The Craniofacial Program at Boston Children’s brings together a team of highly experienced neurosurgeons, plastic surgeons, oral and maxillofacial (face and jaw) specialists, dentistry professionals, psychologists and social workers, all experienced in rare malformations. While repairing the physical deformity, we also focus on minimizing disability from any neurologic and developmental damage that may have occurred. Meet our craniofacial team.
Our program has pioneered the use of 3D-printed models of the brain and skull to help plan operations for craniofacial deformities, including encephalocele. The models are created from an individual child’s imaging scans in partnership with Boston Children’s Simulator Program, allowing surgeons to plan and rehearse complex operations. Learn more about our craniofacial research.
For an appointment with the Cleft and Craniofacial Center, more information or to obtain a second opinion for your child, please call us at 617-355-6309 or email our program coordinator, firstname.lastname@example.org.
For families residing outside of the United States, please call Boston Children's International Health Services at +01-617-355-5209.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”