Myelomeningocele
Important information about myelomeningocele:
Early in pregnancy, the fetus' spinal column, spinal cord, and nerves may not correctly develop. The causes of myelomeningocele are beyond your control. When the spinal cord is exposed on the lower back, it is called a myelomeningocele (MMC). This is a form of spina bifida. Myelomeningocele requires surgery to close the defect on the back.
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| Drawing of an infant with MMC |
The nerves in the lower back are impaired in infants with myelomeningocele. These nerves control movement of the legs and feet, lower body sensation, and bowel and bladder function. Infants with myelomeningocele are also at risk for hydrocephalus (excessive fluid in the brain). Each child is unique. Our team of specialists will evaluate and discuss your infant’s treatment plan with you.
Surgery to close the opening in the back:
Surgery is usually done within the first few days after birth. It can also be performed before birth. The goal of surgery is to prevent further damage to the affected nerves by covering the spinal cord.
Patient instructions:
Wound care after postnatal surgery
Wash the incision with Johnson & Johnson® soap twice a day. Check the wound daily. There will be an incision along your infant’s lower back. During surgery, a glue-like sealer may have been applied on top of the stitches. It will flake off by itself. There should not be any drainage or watery fluid coming from the incision line. If you see this, immediately call the neurosurgery office. Do not touch the incision when burping or patting your infant. The stitches will dissolve and do not need to be removed. This will take several weeks.
It is normal to have some mild redness around the stitch holes or on the incision line. Call the neurosurgery office if your infant has a fever or if the area around the outside of the incision is red, hot, and tender or has any fluid or pus draining from it.
Wound care after prenatal surgery
If your infant had prenatal surgery to correct the MMC, the wound is healed, and no further care is needed.
Caring for your baby after birth:
Bathing
You can sponge-bathe your infant. Use lukewarm water. Your infant may not be able to feel that water is too hot on the lower body. At their first outpatient appointment, your neurosurgery team will talk to you about how to submerge your infant’s lower back in a bathtub.
Diaper changes
Infants born with spina bifida need diaper changes often to prevent diaper rash. Use a thick layer of diaper cream. If you notice stool (poop), use a damp, warm cloth to clean. If that does not work, use Johnson & Johnson soap on a damp cloth. If your infant has a reaction to diaper wipes or creams, change to a different product.
Feeding
Breast and bottle-feeding are both fine for infants with spina bifida. You can decide which is best for you and your infant. When feeding your infant, hold them in a position that is comfortable for both of you. There are no restrictions for holding or positioning your infant.
Other areas of the body that are affected by myelomeningocele:
Even after surgery, there can still be problems with brain and spinal cord development, as well as with movement and feeling in the legs, bowel, and bladder. Because infants can't walk or control their bowels or urine, existing nerve damage might not be noticeable.
Hydrocephalus
Hydrocephalus is an abnormal build-up of fluid inside the brain. This typically occurs after the MMC is closed. This needs to be treated. We will watch for symptoms while your infant is in the hospital. Sometimes the symptoms develop later. Call the neurosurgery office if your infant has:
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Increasing head circumference (your healthcare provider will measure this)
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Bulging and firm “soft spot” on the head (when the infant is quiet and held upright)
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Vomiting
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Fussiness (unable to calm your infant)
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Sleepiness (unable to wake your infant to feed)
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Eyes staring downwards (unable to look up)
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Fluid collection in myelomeningocele closure site
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Draining cerebral spinal fluid, clear fluid drainage, from the MMC site
Hydrocephalus may need to be treated with a surgical procedure, known as a shunt. This is performed by a neurosurgeon.
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| Picture of a child with a shunt |
Movement
Spina bifida affects the nerves that control movement of the legs and feet. A physical therapist (PT) will meet with you before discharge to teach you exercises for your infant. These exercises help to keep movement in your infant’s joints. Your PT will help to arrange home therapy for your infant. The Spina Bifida Program Clinic will help determine if braces are needed in the future to walk.
Orthopedic conditions
Infants with spina bifida may also be born with a clubbed foot or clubbed feet. A clubbed foot is an inward turning of the foot. Casting is often done to help correct this condition. After a series of casting, a surgical procedure may need to be performed to correct the clubbed foot or clubbed feet. Casting can often begin while the infant is in the hospital after birth. If your infant is sent home with a cast, we will teach you how to care for it.
Infants with spina bifida can also have other orthopedic conditions, such as a dislocated hip and other foot, ankle, and leg issues. The orthopedic team will discuss possible treatment plans for these conditions.
Sensation
Infants with spina bifida may have decreased sensation (feeling) in the feet, legs, and buttocks. This puts them at risk for painless sores. Monitor for diaper rashes and use thick layers of diaper cream with all diaper changes. Do not let your infant chew on their feet. Check the temperature of bath water.
Bowel and bladder
Infants with spina bifida are at risk for constipation or hard, dry bowel movements. Call the Spina Bifida Program Clinic if you notice your baby is having hard bowel movements.
Most infants with spina bifida are born with normal kidneys but their bladders may not store and empty urine. Some infants may not be able to empty their bladder and will need a catheter to empty it. Your infant will have an ultrasound to evaluate their kidney function. At the 2–3 month visit, a bladder function test will be done and repeated as needed.
To prevent a urinary tract infection (UTI), your infant will be on a low dose antibiotic once a day. Keep your infant’s diaper area clean. For girls, wipe from front to back to prevent poop from infecting the urine. If your baby develops a fever, this could be a sign of a UTI. Call your healthcare provider for an evaluation.
Tethered cord
Even after the myelomeningocele is closed, the spinal cord can “re-tether” at any point in your child’s life and cause symptoms. There is nothing you can do to prevent this. Call your spina bifida healthcare provider for worsening issues with bowel or bladder control, leg weakness, and severe pain in the back or legs. Children may need another surgery to “de-tether” the spinal cord.
Allergies
Children with myelomeningocele are at high risk for developing an allergy or sensitivity to latex (natural rubber). A sensitivity does not mean your infant is allergic to latex. When your infant goes home, limit exposure to latex. You will receive a list of common products that contain latex.
Primary care provider
Choose a primary care provider (PCP)before you take your infant home. Inform your healthcare provider that your baby has spina bifida. Our team will speak to them about your infant’s care. Your PCP will care for your child’s general health, minor illnesses, and give immunizations. Make an appointment within two to three days after discharge.
Follow-up visits
The spina bifida team includes doctors, surgeons, nurses, nurse practitioners, physical therapists, social workers, and neuropsychologists with extensive experience caring for children with spina bifida and their families. This includes specialists from areas such as neurosurgery, urology and orthopedics.
Members of the spina bifida team will meet with you before discharge to answer your questions. They can help with financial issues and coordinate appointments and medical needs. They will help you contact other parents of children with spina bifida.
The neurosurgery team will see your infant for an office visit one month after discharge. Your child will receive ongoing care from the spina bifida team
Contact your CHOP team with questions or concerns.
215 590-2483
215-590-2780
215-590-2754
215-590-1527
Reviewed July 2024 by Allison Rodman PA-C