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Lipomeningocele

Description

Lipomeningocele is a type of neural tube defect. Neural tube defects are a group of birth defects of the brain, spine, or spinal cord. Other neural tube defects include spina bifida, spina bifida occulta, and occult spinal dysraphism. 

Lipomeningocele occurs when part of the spinal cord protrudes (sticks out) of the spinal column and forms a sac under the skin. Because the spinal cord does not close completely and it attaches itself to the tissues of the back, the nerves of the spinal canal can be damaged. This can result in a variety of health and developmental issues. 

Causes of Lipomeningocele

The exact causes of neural tube defects are not known. Getting enough folic acid, a type of B vitamin, before and during pregnancy can help to prevent neural tube defects. Mothers who are obese, have poorly controlled diabetes, and mothers who take certain anti-seizure medicines are at more risk of having a baby with a neural tube defect.

Diagnosis

Lipomeningocele can sometimes be detected before birth by ultrasound. More often, however, lipomeningocele is found when children have neurologic symptoms during the early years of life. Some children with lipomeningocele have skin symptoms such as a fat collection in the lower back, a hairy patch, or a dimple above the buttocks.

Treatment

The entire lipoma is not usually removed. Rather, a neurosurgeon works to “untether” the spinal cord. This means to detach the spinal cord from the tissues of the back. The goal of this is to reduce stretching or pulling on the spinal cord that happens when the child grows. 

How Many People Have Lipomeningocele?

Lipomeningocele is rare. It affects about 1 of every 50,000 babies.

Associated Developmental and Learning Issues

  • Movement/mobility difficulties: Most children with lipomeningocele walk well. Some children need the assistance of a walker. 
  • Communication difficulties: Some children with lipomeningocele develop speech skills later than other children their age. 
  • Learning: Some children with lipomeningocele have learning disabilities.

Associated Medical Conditions

Some children with lipomeningocele have other health complications. It is important that these are recognized and treated. A child with lipomeningocele who is physically healthy is more likely to do well in school and in other treatments. This contributes to more independence, better daily functioning, and better quality of life.

  • Bladder control problems
  • Bone and muscle problems such as scoliosis
  • Bowel control problems
  • Gastrointestinal issues including constipation
  • Growth and nutrition problems, obesity
  • Kidney problems, including infections and hydronephrosis
  • Skin breakdown
  • Spine issues including spinal cord tethering

Lipomeningocele itself does not get worse over time. However, how it affects a person may be different at different points in the person’s life. Symptoms like bowel and bladder control and muscle and bone problems can bet better, worse, or stay the same during the course of a person’s life. Although lipomeningocele is not "curable" in the usual sense, treatment can help improve function and prevent complications.

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Related Services

  • Community Consultation Program - Provides technical assistance, training, and continuing education to schools, community and state agencies that provide services to children with learning and behavioral challenges.
  • Physical Disabilities Program - Provides evaluation and coordinated treatment recommendations for children with physical disabilities.

URMC Collaborations

  • Child Neurology - Assures children have the evaluation and treatment they need for seizures or other neurologic issues.
  • Orthotics and Prosthetics
  • Pediatric Gastroenterology - Evaluates and offers suggestions for treatment for problems with slow bowel motility, constipation, or gastroesophageal reflux (GER).
  • Pediatric Neurosurgery - Provides care for children with CP who have problems with too much fluid in the brain or require a shunt to drain fluid (ventriculoperitoneal (VP) shunt). Dr. Howard Silberstein is the pediatric and adult neurosurgeon who provides care for both children and adults with cerebral palsy when needed.
  • Pediatric Orthopaedics - Monitors and treats bone and muscle issues.
  • Pediatric Sleep Medicine Service - Evaluates and treats sleep problems.
  • Pediatric Urology - Monitors the bladder and kidneys and screen for hydronephrosis, infections, and kidney growth. Can also work to develop a toilet training program based on the child's ability and the bladder's function.
  • Physical Medicine and Rehabilitation - Provides outpatient evaluation and intense and targeted therapy programs for children and teens. Pediatric physical therapists provide evaluation and treatment of independent daily living skills and equipment needs. Pediatric occupational therapists provide evaluation and treatment of fine motor skills, handwriting, daily living skills, sensory processing, and adaptive equipment needs.
  • Speech Pathology Department - Meets the needs of children who have difficulties with speech, communication, oral-motor control, and feeding/swallowing.

Resources

You can find resources for lipomeningocele in our Resource Directory!