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What Is Myelomeningocele?
Myelomeningocele is a neural tube defect and the most severe form of spina bifida. It develops early in pregnancy when the spinal column and spinal canal do not close completely. As a result, the spinal cord, nerves, and protective membranes may protrude through an opening in the back, often forming a fluid-filled sac. This condition can cause nerve damage and lifelong challenges with movement, sensation, bowel and bladder function, and other aspects of health.
Is spina bifida the same as myelomeningocele?
Myelomeningocele is the most severe type of spina bifida.
How common is myelomeningocele?
Myelomeningocele is uncommon, affecting about 1 in every 4,000 births, but it is the most severe form of spina bifida.
What causes myelomeningocele?
Myelomeningocele develops during the first month of pregnancy. It is caused when the neural tube, including the backbone and spinal canal, does not close completely. The exact cause is not known, but genetics, folate status, certain medications, maternal health conditions, and environmental factors may all play a role.
What are the risk factors and complications of myelomeningocele?
Myelomeningocele risk factors
You may be at higher risk of having a baby with myelomeningocele if you:
- Experience an elevated body temperature during early pregnancy, such as from using a hot tub or having a prolonged high fever.
- Have a personal or family history of a neural tube defect.
- Have certain chronic health conditions, such as poorly controlled diabetes or obesity.
- Have low levels of folate (folic acid) in your body.
- Take certain antiseizure medications during pregnancy.
Complications of myelomeningocele
Myelomeningocele can cause serious complications, including:
- Developmental delay and learning challenges.
- Hydrocephalus and Chiari malformation type 2.
- Loss of bowel and/or bladder control.
- Meningitis, which is an infection in the membrane around your brain and spinal canal.
- Orthopaedic problems related to paralysis and mobility.
- Paralysis, weakness, or loss of sensation below the affected area of your child’s spine.
- Seizure disorder.
- Skin breakdown or infection around affected areas.
- Urinary tract infections.
How can I reduce my child’s risk of myelomeningocele?
Although some cases of myelomeningocele can’t be prevented, you can reduce your child’s risk by:
- Avoiding hot tubs, hot baths, and fever-causing illnesses or infections that may raise your body temperature during early pregnancy.
- Maintaining a healthy weight.
- Managing chronic conditions, such as diabetes.
- Talking to your doctor about taking folic acid, along with other prenatal vitamins, before conception and during pregnancy.
- Telling your doctor about all medications you take and discussing the risks and benefits of continuing to take them during pregnancy.
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What Are the Signs and Symptoms of Myelomeningocele?
The most noticeable symptom of myelomeningocele is a fluid-filled sac on your baby’s spine. The sac can develop anywhere along your child’s spine but is most commonly located in the mid- to low-back.
In general, a myelomeningocele higher on the spine is associated with more severe weakness and mobility limitations than one located lower on the spine.
Many babies (about 80%) with myelomeningocele also develop hydrocephalus, which occurs when fluid builds up in the brain. Other associated conditions can include Chiari malformation type 2, hip and foot deformities, and bowel or bladder dysfunction.
When should I see a doctor about my child’s myelomeningocele symptoms?
Myelomeningocele is often diagnosed before birth or at delivery. Once it is identified, your care team will begin planning the next steps, which may include fetal evaluation, delivery planning, and surgery before or shortly after birth.
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How Do You Diagnose Myelomeningocele?
Many cases of myelomeningocele are identified during a prenatal ultrasound. Your doctor may also recommend blood tests, amniocentesis, fetal MRI, or other imaging studies to help confirm the diagnosis and plan treatment.
What to expect during your visit
During your visit, your doctor may:
- Review prenatal imaging, test results, symptoms, and your medical history.
- Recommend additional testing to confirm the diagnosis and guide treatment planning.
Tests to diagnose myelomeningocele
Tests to diagnose myelomeningocele include:
- Amniocentesis — A test that involves taking a sample of amniotic fluid that surrounds your baby in the womb and checking it for signs of genetic diseases.
- Blood tests — Your doctor will order a blood test to check the amount of alpha-fetoprotein (AFP) in your blood to screen for myelomeningocele between 16 and 18 weeks of pregnancy.
- Magnetic resonance imaging (MRI) or CT scan — If myelomeningocele is not diagnosed during pregnancy, your doctor may order an MRI or CT scan to create images of your child’s spine.
- Prenatal (fetal) ultrasound — A routine test during pregnancy that uses sound waves to create images of your baby in your womb. Your doctor will check for signs of myelomeningocele during your second trimester ultrasound between weeks 18 and 22.
Myelomeningocele prognosis
Your child's symptoms and long-term outlook depend on:
- The extent of nerve and spinal cord damage.
- Whether hydrocephalus, Chiari malformation type 2, or other related conditions are present.
- Where the myelomeningocele is on your child’s spine.
- How early the condition is diagnosed and treated.
In general, children with lesions higher on the spine are at greater risk for more significant weakness and mobility limitations. Outcomes vary widely, and many children benefit from early surgery and long-term care from a coordinated multidisciplinary team.
Can a baby survive with myelomeningocele?
Yes. Many babies with myelomeningocele survive and grow into adulthood, but they often need ongoing care.
Complications include:
- Frequent urinary tract infections.
- Loss of bowel and/or bladder control.
- Orthopaedic problems.
- Weakness or paralysis affecting the legs and lower body.
Can people with myelomeningocele walk?
Some people with myelomeningocele can walk, but others need to use a wheelchair. People who have a myelomeningocele lower on their spine are more likely to be able to walk than those whose myelomeningocele is located higher on their spine.
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How Do You Treat Myelomeningocele?
The goals of myelomeningocele treatment are to protect the exposed nerves and spinal cord, close the opening in the spine, reduce the risk of infections, and support your child's long-term function.
Treatment options include:
Fetal surgery
Fetal surgery, also called prenatal or in-utero surgery, is performed during pregnancy in carefully selected cases. It is done by a specialized team that may include pediatric neurosurgeons, maternal-fetal medicine specialists, anesthesiologists, and other experts.
Specially trained anesthesiologists administer anesthesia and other medications to keep you comfortable and support both you and your fetus during the procedure.
What types of fetal surgery are performed to treat myelomeningocele?
At UPMC, our pediatric neurosurgeons offer two types of fetal surgery for myelomeningocele, including:
- Minimally invasive fetoscopic surgery — Performed through a small incision in your abdomen and uterus using a fetoscope, a flexible tube with a light and camera on the end. The camera transmits images of the surgical area to a screen, allowing your surgeon to see the area and perform the procedure using special surgical instruments inserted through the tube.
- Open surgery — Performed through an incision in your abdomen and uterus. The fetus remains inside your uterus during the procedure. After the procedure is complete, your uterus and abdomen are closed so your pregnancy can proceed.
During fetal surgery for myelomeningocele, your child’s surgeon will use sutures (stitches) or tissue grafts to repair open areas in your child’s spine.
What are the benefits of fetal surgery for myelomeningocele?
Because the exposed spinal cord can be injured throughout pregnancy, fetal surgery may be considered in carefully selected cases before 26 weeks of pregnancy.
Although fetal surgery carries important maternal and fetal risks and cannot reverse damage that has already occurred, it may improve some outcomes in selected cases.
Benefits of fetal surgery for myelomeningocele may include:
- Reduced need for some hydrocephalus-related procedures.
- Improved motor outcomes in some children.
- Improved hindbrain anatomy in selected cases.
- Potential improvement in some aspects of mobility and function.
Postnatal surgery for myelomeningocele
If fetal surgery is not an option, your care team will usually repair the myelomeningocele within 24 to 48 hours after birth.
Ongoing symptom management
Even after surgery, your child may need lifelong follow-up to manage complications of myelomeningocele. Care may include treatment for hydrocephalus, bladder and bowel management, orthopaedic care, rehabilitation, and physical or occupational therapy to support mobility, strength, and daily activities.
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Why Choose UPMC for Myelomeningocele Care?
When you choose UPMC for myelomeningocele care, your child will receive:
- Access to world-class neurosurgery expertise — Our world-renowned experts treat the full spectrum of pediatric neurosurgical conditions using the latest diagnostic and treatment techniques.
- A full range of treatment options — We offer fetal, minimally invasive, and traditional open surgical procedures, allowing us to effectively treat all types of disorders while reducing your child’s risk of complications.
- Multidisciplinary care — We partner with maternal-fetal medicine specialists, neurologists, rehabilitation specialists, and other medical experts to provide complete care that optimizes your child’s recovery and quality of life.
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