Receiving the news that your child has lipomyelomeningocele is never something any parent wants to experience. If your child has been diagnosed with this benign but potentially debilitating growth, it’s essential you learn as much as possible so that you, together with your pediatrician and neurosurgeon, can make the best treatment choices possible for your child.

About Lipomyelomeningocele

Lipomyelomeningocele or a lipoma is a fatty growth that develops underneath the skin on your baby’s back (usually located in the center) and affects his or her spine. This mass will attach itself to the spinal cord. This attachment is often referred to as a “tethering,” meaning the spinal cord is abnormally attached to the fatty tumor. This attachment will eventually restrict the movement or directly compress the spinal cord causing symptoms.

Lipomyelomeningocele is a congenital defect, meaning that it is present before your baby is born. In the case of lipomyelomeningocele, development occurs around the 4th to 6th week of pregnancy. This is the period of time when the brain and spinal cord are developing. There is no hereditary link that has been found, nor is this condition associated with a lack of folic acid in the mother’s diet.

Lipomyelomeningocele occurs in an estimated one or two out of every 10,000 babies born in the US each year and is slightly more prevalent in girls than boys.

Signs and Symptoms of Lipomyelomeningocele

The symptoms of lipomyelomeningocele can be similar to those caused by other conditions. Because of this, it’s necessary to get a definitive diagnosis so that the proper treatment can be sought as soon as possible.

Children with lipomyelomeningocele may have a distinct lump on their back as early as birth. If it is smaller, it may not be visible for several months or even years. Many babies are able to be diagnosed shortly after birth, due to the presence of one of these lumps. Other signs that your baby may have lipomyelomeningocele include a deep dimple, thick patch of hair or a hemangioma (red birthmark) located over the lower spine.

Most symptoms of lipomyelomeningocele are caused by the pressure being placed on the spinal cord as it is distorted from its normal shape and/or compressed. Symptoms of lipomyelomeningocele can include weakness in the legs and back and leg pain, neuromuscular scoliosis, orthopedic abnormalities of the foot and leg, and difficulty walking. There may also be numbness. Recurrent urinary tract infections are often also seen in children with lipomyelomeningocele. In more advanced cases, bowel and bladder control may be affected.

Some children experience symptoms later in life, while some may never experience problems.

Diagnosis of Lipomyelomeningocele

Diagnosis of lipomyelomeningocele may occur while your baby is in utero if positioned properly during an ultrasound. In many cases, however, it first occurs at birth if your doctor or pediatrician notes a lump on your baby’s back or the other signs as noted above. If this is the case, your child will undergo an MRI so that your doctor can clearly see the spine and its surrounding tissues.

In cases where your child develops symptoms later on, you will need to make an appointment with your pediatrician. A full exam including basic neurological tests will be performed. At this point, your doctor may refer your child for an MRI to make an accurate diagnosis.

Treatment Options for Lipomyelomeningocele

Surgery is the recommended option for treatment of lipomyelomeningocele. This involves general anesthesia, meaning your child will be asleep for the length of the procedure. Your neurosurgeon will carefully remove as much of the lipoma (the fatty tumor causing the issues) as possible. The membrane protecting the spinal cord, known as the dura mater, will be closed over the spinal cord where it was previously attached to the lipomyelomeningocele.