We have a 4-year-old child with myelomeningocele at the L5S1 level. He can walk and does pretty good, but his foot was in a heel-down/toes up position that caused sores to develop on his heel. He had surgery to fix the problem. He’s supposed to wear plastic braces inside his shoes but he refuses. Will this undo the surgery?

Myelomeningocele is a protrusion of the meninges and spinal cord. Meninges is the covering around the spinal cord. In this condition, the meninges fail to close when the child is developing in the womb.

This type of defect is called a neural tube disorder. The neural tube is the protective sheath of bone and meninges that encase the entire spinal cord. It is formed early in utero (around the 19th day in the womb). The most common neural tube defect is called spina bifida occulta. This refers to an incomplete closure (incomplete fusion) of the arch of bone around the spinal cord.

Myelomeningocele is more severe than spina bifida. There is a failure of the bone to close around the spinal cord (like in spina bifida), but there is also a failure of the meninges to cover and protect the spinal cord. Generally these defects occur in the lumbosacral area.

Myelomeningocele can cause foot deformities as a result of muscle imbalance. Not all children with an L5S1 level myelomeningocele have foot deformities requiring treatment. When these occur, surgery at an early age is often advised.

Most of the time, the child is put in a cast after surgery for four to six weeks. When the cast is removed, a special plastic brace called an ankle-foot orthosis (AFO) is usually worn. The orthosis is designed to perform several functions. It helps with control ankle position and function. It helps the child stay in an upright position and avoid a crouching position with hips and knees bent.

Usually the AFO is designed especially for each child depending on whether there is a need to control upright posture and prevent a crouch position or to reduce ground-floor reaction. Ground-floor reaction refers to the force that goes up through the leg when the heel hits the floor while walking.

As you have found out, keeping the braces on can be the biggest challenge for a young child. Finding ways to gain his cooperation can be exhausting. Some parents find it helpful to put up a colorful chart with stickers in each square for every hour the braces are left on.

Others give the child a colored chip for each morning and/or each afternoon that the AFOs stay on. When the child gets a certain predetermined number of chips, then he can exchange them for a special treat. This varies from family to family. It could be an extra book read to him by the parent, a ride outdoors in the wagon, or a special time to listen to music.

Make sure the child isn’t refusing to wear the AFO because they are uncomfortable, pinching, or rubbing. Look at his feet, ankles, and lower leg after the AFO has been worn for 30 minutes. Any signs of redness or marks left by the orthotic are an indication that it needs adjustment.

Make an appointment with the orthotist who made the insert. Have the child wear the brace for at least 30 minutes before the appointment so the orthotist can see where and what is the problem. It may be the problem is as simple as that. But if not, keep trying to keep him in the brace as much as possible.