What is Encephalocele?

January 24, 2023
Janelle Thomas MSN, RN
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Encephalocele is a serious condition that requires a high level of care and attention. Parents dealing with an encephalocele growth in a child commonly have a high level of doubt and uncertainty about treatment and what the future holds. This guide can help families better understand what this condition is, what the treatment options are, and how to care for a child with an encephalocele on a long-term basis.

By educating yourself as a caregiver and taking a proactive approach you can make an informed and confident decision for your child and family.

What is encephalocele?

An encephalocele describes a rare but serious birth defect that affects the brain and skull. Encephaloceles are protrusions of brain matter and the surrounding membrane that extend through an opening in the skull. An encephalocele can develop anywhere on the centerline of the skull — with the forehead, top, and back of the head being common locations.

According to the CDC, researchers estimate that this condition affects about one in every 10,500 babies born in the United States.

What causes encephalocele?

Encephaloceles are caused by a neural tube defect in the brain, which is a narrow pathway of nerve cells that forms during pregnancy and eventually develops into the brain and spinal cord. Neural tube defects cause this pathway to not fully close and for gaps to form in the skull, leading to conditions including spina bifida and encephaloceles.

Scientists and researchers still do not fully understand exactly how neural tube defects lead to the development of encephaloceles. An inherited component is believed to be a factor, as families with a history of conditions such as spina bifida and anencephaly are at a higher risk of also having babies with encephaloceles. Factors including low levels of the b vitamin, folic acid and preterm births also increase the chances of an encephalocele developing.

Encephalocele Symptoms

Potential symptoms of an encephalocele include:

  • Visible sac-like protrusion along the center of the skull
  • Neurologic dysfunction
  • An accumulation of cerebrospinal fluid in the brain, called hydrocephalus
  • Small head size, called microcephaly
  • Difficulty with coordinating movement
  • Vision problems
  • Seizures

Encephaloceles can lead to long-term complications, including developmental delays, inhibited growth, and slow mental development.

Preventing Encephaloceles and Neural Tube Defects

Doctors recommend taking folic acid regularly to reduce the risk of encephaloceles and other neural tube defects. It is estimated that this decreases the chances of a baby developing a neural tube defect by as much as 78%.

Women of childbearing age who are considering having children or are currently pregnant should take 400mg of folic acid daily, either through a supplement or a healthy diet. Folic acid can be found naturally in leafy greens, beans, citrus, beets, brussels sprouts, egg yolks, nuts, bananas, avocados, as well as fortified grains used in pastas and breads.

Diagnosing Encephalocele

Doctors can typically diagnose encephaloceles right at birth by visually detecting the growth on the skull. In some cases, encephaloceles are detected before birth during a routine prenatal ultrasound, which will usually be confirmed through fetal magnetic resonance imagery (MRI).

In rarer cases, smaller encephaloceles on the forehead may go undetected for a period of time and will be diagnosed later if it grows larger or begins causing symptoms.

Encephalocele Treatment Options

An encephalocele is most commonly treated with surgery. Depending on the size and type of growth, a surgeon can remove excess fluid and non-functioning brain matter while carefully reinserting functional brain material back into the skull and closing it. A shunt may be inserted to drain excess cerebrospinal fluid that can continue to build up.

This can be a highly complex procedure and may involve multiple surgeries, particularly if any craniofacial reconstruction is required. Even with successful procedures, neurological symptoms may persist.

Caring for a Child with Encephalocele

After surgery, children recovering from encephalocele will often have ongoing neurological challenges and require long-term treatment. Patients normally require assistance with physical rehabilitation and mental development. In more severe cases, children may need help with feeding and basic mobility.

It is common for families dealing with encephaloceles and other issues related to neural tube defects to turn to pediatric home health services for assistance. Home health professionals can help with a wide array of needs including feeding, administering medication, accompanying children to appointments, and more. From minor to complex cases of encephalocele, home health care services can be there to provide the assistance a family needs.

Contact Care Options for Kids for Home Health Care

It can be hard to balance your time between work, home, and caring for a child. That’s why our team of skilled professionals at Care Options for Kids is here to help. We have been enforcing precautionary measures and following the Centers For Disease Control (CDC) guidelines for COVID-19 to ensure the safety and health of our clients and employees.

Our home health care services offer one on one care support in the comfort of your home. We refer loving and competent nurses to provide customized care for families — from a few hours a day to around-the-clock supervision. Contact us directly to speak with a home health care professional or request a free in-home assessment. Together we can determine the best plan of action to keep your loved ones happy and healthy.

If you or a loved one are considering Pediatric Home Health Care Services, contact the caring staff at Care Options for Kids. Call today at (888) 592-5855.