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Condition Guide

Encephalocele: Causes and Care

Encephalocele is a rare birth defect in which part of the brain and its coverings push through an opening in the skull. Its effects range widely, and children with more significant encephalocele often benefit from skilled pediatric home care.

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Focus Family Care Clinical Team· Medically reviewed by Stephanie Marshall, APRN, Director of Nursing, Focus Family Care· Updated August 2026

Quick Answer

Encephalocele is a neural tube defect in which the neural tube does not close fully before birth, allowing brain tissue and membranes to protrude through a gap in the skull, often at the back of the head. Treatment usually includes surgery, and effects range from mild to significant developmental and medical needs.

Key Takeaways

  • Encephalocele is a **neural tube defect** present at birth.
  • Part of the **brain and its coverings push through an opening in the skull**.
  • It is usually treated with **surgery**, often in infancy.
  • Effects range from **mild to significant**, and complex cases benefit from home nursing.

What Is Encephalocele?

Early in pregnancy, the neural tube, which forms the brain and spinal cord, normally closes completely. In encephalocele, part of it does not close, and brain tissue and the membranes around it push out through a gap in the skull, most often at the back of the head but sometimes near the nose or forehead. Adequate folic acid before and during early pregnancy lowers the risk of neural tube defects.

What to Expect

Surgery is usually done to place the protruding tissue back and close the opening. The outlook depends on how much brain tissue is involved and whether other conditions are present. Some children develop typically, while others have developmental delay, seizures, hydrocephalus, vision problems, or movement differences that need ongoing care and therapy.

How Home Care Helps a Child With Encephalocele

Children with more significant encephalocele may need help with feeding, seizures, breathing, or a shunt for hydrocephalus. Focus Family Care provides pediatric home care and pediatric private duty nursing, including feeding tube support, so a medically complex child can be cared for safely at home. A registered nurse coordinates with the child's neurosurgery and specialty team.

How We Know This

This educational guide is reviewed by Focus Family Care's Director of Nursing, a licensed APRN. It summarizes general information from the sources below and is not a substitute for advice from your own physician. Focus Family Care is a Florida-licensed home health agency and nurse registry (NR #30211928, HHA #299995403).

Sources

Frequently Asked Questions

Can encephalocele be treated?

Yes. Encephalocele is usually treated with surgery, often in infancy, to protect the brain tissue and close the opening. Additional care depends on the child's specific needs.

What is the outlook for a child with encephalocele?

It varies widely, from typical development to significant developmental and medical needs, depending on how much brain tissue is involved and whether other conditions are present. Early care and therapy help each child.

Does encephalocele require home nursing?

Not always. Skilled pediatric nursing is used when a child also has complex needs such as seizures, feeding difficulty, breathing support, or a shunt. Focus Family Care provides this care at home.

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