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What Is Lipomyelomeningocele?

Maddy Lavalier in the skyway at Gillette Children's

Lipomyelomeningocele, which is associated with spina bifida, is a medical condition that affects a child’s backbone. Lipomyelomeningocele is a fatty growth that develops underneath the skin on your child’s back and attaches to their spinal cord.  

This attachment, often called “tethering,” refers to the spinal cord being abnormally attached to the fatty tumor. The tumor is not cancerous, but this attachment will eventually restrict your child’s movement or directly compress the spinal cord and cause symptoms.  
It looks like a large lump you can usually see on the outside of a child’s body. Lipomyelomeningocele occurs in an estimated one or two out of every 10,000 babies born in the U.S. each year, and it’s slightly more prevalent in girls than boys. 

Symptoms of Lipomyelomeningocele  

Due to compression or distortion in the spinal cord, a child with lipomyelomeningocele will typically show the following signs and symptoms: 

  • Weakness and numbness in the legs 
  • Recurrent urinary tract infections 
  • Orthopedic abnormalities of the feet and legs 
  • Trouble walking 
  • Pain in the back and legs 
  • Changes in bladder and bowel control 
  • Neuromuscular scoliosis 

In general, a child diagnosed with lipomyelomeningocele can have a variety of different symptoms. Some children may develop symptoms as soon as they’re born, and some may experience symptoms later in life. Other children may experience no symptoms at all. 

It’s important to note that the symptoms of lipomyelomeningocele can be similar to those of other conditions. Because of this, and to ensure proper treatment begins as soon as possible, it’s essential to get a definitive diagnosis. 

Diagnosing Lipomyelomeningocele  

Diagnosing lipomyelomeningocele can happen while your child is still in utero if they’re positioned properly during the ultrasound. Doctors can also diagnose lipomyelomeningocele when your child is born.  

Doctors may notice a lump or some other type of mark on your baby’s back, such as a fat pad, dimple, birthmark or tuft of hair. However, some children show no visible symptoms whatsoever.  

To rule out the possibility of lipomyelomeningocele, your child can undergo neurological tests under the instruction of a pediatrician. If the doctor notices anything concerning, they may refer your child for an MRI to accurately diagnose the situation. 

Lipomyelomeningocele Treatment   

Most babies diagnosed with a lipomyelomeningocele will need surgery to deal with the issue. If diagnosed at a very early stage, your child can have surgery before the age of 1. 

  • The surgery itself involves general anesthesia, meaning your child will be asleep for the entirety of the procedure.  
  • Your doctor will carefully remove as much of the fatty tumor—also referred to as a lipoma—as possible and then close the hole where the fatty mass enters your baby’s spinal cord area.  
  • The goal of completing the surgery is to preserve or improve your child’s current function and prevent future deterioration of neurological function. 

Treating Lipomyelomeningocele at Gillette Children’s 

Regardless of where you are on your child’s healthcare journey, we strive to provide coordinated lipomyelomeningocele care that is easy to navigate.  

At Gillette Children’s, we are committed to helping our patients and their families through every stage of care, and understand how essential it is for you to learn as much as you can about this condition. Together with your child’s team of medical experts, you can move forward and make the best treatment choices possible for your child. 

We’re here to tell you that your child and family can take on a diagnosis like lipomyelomeningocele and all its unique challenges, and still thrive and pursue the best life possible — and we’re here to help you navigate it all.  

While babies and children with this benign but potentially debilitating condition often face complex issues that need special care, our pediatric neurosurgeons are experienced with the latest techniques and procedures. We are fully committed to applying the latest research to ensure the best possible outcome for your child and family.

Learn more about spina bifida care and treatment at Gillette Children’s. 

How can we further help you and your family when it comes to your child’s lipomyelomeningocele diagnosis and care? Contact us today to connect with the right specialist who can provide additional support, resources and answers to your questions.