What Is a Myelomeningocele?

A view of a myelomeningocele or spina bifida, a formerly common birth defect A myelomeningocele (pronounced my-e-lo-MENING-o-seal) is a defect of the backbone (spine) and spinal cord. Before birth, the baby's backbone, spinal cord and the structure they float in (spinal canal) do not form or close normally. A myelomeningocele is the most serious form of spina bifida . In babies with a myelomeningocele, the bones of the spine (vertebrae) don't form properly. This lets a small sac extend through an opening in the spine. The sac is covered with a membrane. It holds cerebrospinal fluid (CSF) and tissues that protect the spinal cord (meninges ). The sac may also contain portions of the spinal cord and nerves. The sac itself may be opened up either before birth or during the birth. A myelomeningocele can occur anywhere along the spinal cord. It is most common in the lower back (lumbar and sacral areas). Babies lose function below the level of the problem. So, the higher the myelomeningocele is on the baby's back, the more loss of function occurs.

Myelomeningocele in Children
Myelomeningoceles are present when a baby is born (congenital). About one to five babies in every 1,000 born in the United States have a myelomingocele. The condition develops during the third week of a womans pregnancy. Doctors don't know exactly what causes myelomeningoceles. But there probably is a genetic component. If a woman has one child with a myelomeningocele, there is a 3% to 5% chance that other children she has will also have the condition. While we don't know the exact cause of myelomeningoceles, doctors do know what can help prevent them. Early in pregnancy, it is very important for women to get enough folic acid

in their diets. This vitamin helps the baby's neural tube develop properly. The neural tube develops into the baby's brain and spinal cord.

Myelomeningocele at Seattle Childrens

Neurosurgeons at Seattle Childrens treat many children with myelomeningoceles. These children often have other complex problems. In our multidisciplinary clinic, our neurosurgeons work closely with experts from other medical fields to make sure your child gets the care they need as they grow. Doctors in our community usually find myelomeningoceles during exams before the baby is born. They refer about 10 to 20 babies with myelomeningocele to Seattle Childrens each year. The babies usually are transferred from the hospital where they are born to Seattle Children's shortly after their birth. Our neurosurgeons are on hand to close the hole in the babys back, usually within 24 to 48 hours of birth. Most children with a myelomeningocele develop hydrocephalus , or too much cerebrospinal fluid in parts of the brain. Neurosurgeons at Seattle Childrens have a great deal of experience putting in shunts, a common treatment for hydrocephalus. We also have a lot of experience treating children with the related problems of spinal cord tethering, Chiari malformation and syringomyelia.

Symptoms of Myelomeningocele
A baby with a myelomeningocele has a sac holding parts of the spinal cord area sticking though the back. This can cause symptoms that include:

Problems with physical movement Loss of sensation; for example, the baby can't sense hot or cold Loss of bowel and bladder control Twisted or abnormal legs and feet, for example, clubfoot Too much cerebrospinal fluid in the head (hydrocephalus) Problems with formation of the brain (Chiari 2 malformation)

Myelomeningocele Diagnosis
Your community doctor may find the condition before your baby is born. A blood test for pregnant women called the quadruple screen may show you have more of a protein called maternal alpha fetoprotein (AFP) in your blood than normal. This is a sign that a developing baby may have spina bifida.

If the blood test shows high levels of AFP, you may have tests to make sure of the diagnosis. These include:

Ultrasound Amniocentesis

Doctors can also find a myelomeningocele after the baby is born. Your baby may have imaging tests that let doctors see the spine. They include:

X-rays Ultrasound CT (computed tomography) scan MRI (magnetic resonance imaging)

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As children born with a myelomeningocele grow, they most likely will need treatment such as medicines and physical therapy. Some may need aids like braces, crutches or wheelchairs. Soon after birth, though, treatment for your baby is surgery.

Surgery for Myelomeningocele

The child is in position for repair of his spina bifida. Very soon after your baby is born, they will need surgery to fix the defect. Because part of your baby's spinal cord area is exposed, your baby is at risk of getting an infection or having more damage to the spinal cord. To lessen the risk, our neurosurgeons will operate within your baby's first 24 to 48 hours of life. The goal of the surgery is to prevent infection and damage to your baby's spinal cord. The surgery does not help your baby develop function that they were not born with. First, the neurosurgeon closes up the covering around the spinal cord (dura mater) so it is watertight. Then the neurosurgeon closes the muscles around the spinal cord. Finally, they close the skin over the open area.

Closing the spinal cord defect in spina bifida. Some myelomeningoceles require the help of plastic surgeons
. First, the plastic surgeon creates a skin graft flap. Usually, they take skin for the graft from the baby's back or bottom. They use the skin graft to close up the area of the myelomeningocele.

Many babies with a myelomeningocele also have too much cerebrospinal fluid in their heads (hydrocephalus). If your baby has severe hydrocephalus at birth, they may need surgery for a temporary drainage system in the first few days after birth. If a temporary system is used first, a permanent shunt will be placed when your baby is stable.

If your baby doesn't have hydrocephalus at birth, doctors wait to see if it develops later. If so, neurosurgeons put in a shunt at that time. Not all babies with a myelomeningocele need a shunt. Most babies who need a shunt get one within 4 to 8 weeks of their birth.