What is a lipomyelomeningocele?

A lipomyelomeningocele (pronounced lipo-my-elo-men-IN-go-seal) is a birth defect that affects a child’s backbone (spine).

A lipomyelomeningocele is a fatty mass under the skin on the child’s back. It is usually in the middle of the back. The mass attaches to the spinal cord and may slowly pull on the cord.

A lipomyelomeningocele is covered by skin. You can usually see it on the outside of the child’s body. It looks like a large lump.

Lipomyelomeningocele in Children

Lipomyelomeningoceles are present when a baby is born (congenital).

Lipomyelomeningoceles happen in only 1 to 2 of every 10,000 babies born in the United States. It is slightly more common in girls.

Babies develop lipomyelomeningoceles early in their mother’s pregnancy – during the fourth to sixth week. There is no known cause. The genes babies get from their parents do not play a role. It is not caused by mothers getting too little folic acid during pregnancy.

Lipomyelomeningocele at Seattle Children’s

We have a great deal of experience caring for babies and children with lipomyelomeningoceles.

Children with this condition often have complex problems that need special care. At Seattle Children’s, we bring many experts together in one clinic to treat your child. Neurosurgery is one part of your child’s medical team. Based on your child’s needs, the team may also include experts from Urology, Neurodevelopmental, Orthopedics and Rehabilitation.

Doctors outside of Seattle Children’s refer babies and children with lipomyelomeningoceles to us each year. Our neurosurgeons have a great deal of experience closing and repairing lipomyelomeningoceles. We use the latest and best neuromonitoring equipment during your child’s surgery.

Symptoms of Lipomyelomeningocele

All babies with a lipomyelomeningocele have a spinal cord that is stuck (tethered) into the fatty mass on their back. This may pull the spinal cord downward. Tethered spinal cord can cause symptoms, including:

  • Back and leg pain
  • Weak and numb legs
  • Changes in bladder and bowel control

Diagnosing Lipomyelomeningocele

Usually, doctors can see a lipomyelomeningocele when a baby is born. They may see a lump or some other type of mark on your baby’s back, such as a fat pad, birthmark, dimple or tuft of hair.

Your child’s doctor will ask for a magnetic resonance imaging (MRI) of the spine to get a better view of your baby’s spinal cord and any problems that relate to it.

Sometimes, there is no lump or other mark on the baby’s back, and the child has no symptoms early on or never has symptoms at all. These cases may be diagnosed later in life, if symptoms develop, or if a scan done for some other reason shows the lipomyelomeningocele.

Treating Lipomyelomeningocele

Most babies with a lipomyelomeningocele need surgery.

Some lipomyelomeningoceles are not diagnosed until later in life because they caused no signs or symptoms earlier. These cases may not require surgery, unless the condition starts to cause pain or other problems.

Even after surgery to repair a lipomyelomeningocele, the spinal cord can become tethered. This can lead to neurological damage over time, especially during growth, because growth can stretch the tethered spinal cord. Slowly, the child may lose sensory and motor function. The feet may get weaker. Bladder and bowel function may get worse or be lost. These changes may last forever.

About 2 in 10 children in the United States who have had surgery for lipomyelomeningocele develop a tethered spinal cord and need more surgeries.

Treatment Options for Lipomyelomeningocele

Most often, babies treated at Seattle Children’s have lipomyelomeningocele surgery before age 1.

Your child’s neurosurgeon begins with a surgery called a laminectomy. The neurosurgeon removes parts of some bones in the spine (vertebrae). This lets the neurosurgeon get to the spinal cord or spinal nerve roots that need repair.

Next neurosurgeons remove some of the fatty mass (sometimes using a laser), and they free the spinal cord. Then they close the hole where the fatty mass enters your baby’s spinal canal. We monitor your child’s nerve function electrically during the surgery.

Contact Us

If you would like an appointment, ask your child’s primary care provider for a referral. If you have a referral, call 206-987-2016 to make an appointment.

Providers, see how to refer a patient.

If you have questions, contact us at 206-987-2016 or 844-935-3467 (toll free).