Spina bifida is one of the most common birth defects, but children can be affected in very different ways. What’s more, there are simple steps that every pregnant person can take to reduce her baby’s risk.
What is spina bifida?
Spina bifida is a birth defect that occurs when a baby’s neural tube — the cells that later grow into a baby’s spinal cord and brain — doesn’t fully close as it develops during the first month of pregnancy.
This can lead to damage of the spinal cord and nerves, which can cause physical and intellectual disabilities. The size and location of the opening in the spine determines what type of symptoms a baby or child may have, as well as how mild or severe they are.
Spina bifida is one of the most common birth defects in babies, occurring in 1,427 children each year, according to the Centers for Disease Control and Prevention (CDC).
Types of spina bifida
There are three major types of spina bifida, and some are more severe than others.
- Spina bifida occulta is the mildest form of spina bifida. Sometimes called hidden spina bifida, it occurs when one or more of the bones in a baby’s spinal column has a small gap while the spinal cord and nerves remain unaffected. In some cases, the only sign is a dimple, birthmark or hair tuft above the gap in the spine. (Many people don’t even realize they have spina bifida unless they happen to have an X-ray.) Others with spina bifida occulta may have back pain, leg weakness, or bowel or bladder problems.
- Spina bifida myelomeningocele is the most severe form of spina bifida. In this type, the protective membranes and part of the spinal cord and nearby nerves push out through the vertebrae into a fluid-filled sac on a baby’s back. The sac may be covered by skin or it may be exposed, which puts a baby at serious risk of infection. Besides the sac on a baby’s back, symptoms can include leg paralysis, loss of bladder and bowel control, orthopedic problems, fluid buildup or infections in the brain.
- Spina bifida meningocele is the rarest type of spina bifida. It happens when the membranes that protect the spinal cord (called meninges) push out through an opening in the vertebrae, resulting in a cyst or fluid-filled sac on the back. Because the spinal cord itself is not pushed out — just the protective membranes — the spinal cord often remains normal and there’s usually no damage to nerves, though some babies may have problems with their bladder or bowels.
What causes spina bifida?
Although the exact causes of spina bifida are unknown, it’s thought that there may be a genetic component in some cases. Experts know that spina bifida can run in families because when one parent has spina bifida or parents already have a child with spina bifida, there’s a higher chance of having a baby with the disorder. (However, many babies are also born to parents with no family history of spina bifida.)
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Certain environmental factors also play a role. Uncontrolled diabetes, obesity and not getting enough folic acid before and during pregnancy can all raise the risk for spina bifida.
Taking certain anti-seizure medications during pregnancy can increase the chances for spina bifida as well, since they can affect the body’s ability to use folate or folic acid (the synthetic form of folate found in some supplements). If you take anti-seizure medications and are trying to conceive or have recently become pregnant, talk with your doctor.
How to lower the risk of having a baby with spina bifida
Getting enough folate or folic acid while trying to conceive and throughout pregnancy is the best way to protect your baby from spina bifida. All women who are pregnant or trying to become pregnant should consume 400 to 800 mcg folate or folic acid in supplement form daily to help prevent neural tube defects, recommends the CDC, the American College of Obstetricians and Gynecologists (ACOG) and the U.S. Preventive Services Task Force (USPSTF).
Most quality prenatal vitamins will have the amount you need. Eat a folate-rich healthy diet, too, and consume foods such as lentils, green leafy vegetables, fortified cereals and orange juice
Folic acid is a B vitamin that the body uses to make new cells, including a baby’s neural tube cells. Since these cells develop very early in pregnancy — within the first four weeks post-conception, before many women even realize that they’re pregnant — it’s best to start taking folic acid and eating a diet rich in folate when you start trying to conceive, experts say. That said, if you become pregnant unexpectedly and haven’t been taking folic acid supplements, try not to worry too much. Just start supplementing ASAP.
Symptoms of spina bifida in babies
The signs and symptoms of spina bifida can vary based on the type a baby has and how severe the condition is. In its mildest form, spina bifida may only show up as a small tuft of hair, dimple or birthmark along a baby’s spine. At its most severe, a baby with spina bifida might have a protrusion or sac along part of the spinal cord or have exposed nerves or tissues (that may or may not be covered by a sac).
Screening tests like ultrasounds, blood tests and amniocentesis can be used to detect the presence of spina bifida during pregnancy. After birth, if a doctor sees an abnormality that suggests a baby might have spina bifida, the diagnosis can be confirmed with tests like ultrasounds, X-rays, MRI or CT scans.
How can spina bifida affect a baby’s health?
Spina bifida’s effects can be mild to severe, depending on the type and its intensity. Babies and children with spina bifida occulta may show no symptoms at all, while those with spina bifida myelomeningocele or meningocele can experience a range of complications. These can include:
- Muscle weakness that can make it harder to walk or cause leg paralysis
- Orthopedic problems like abnormal growth or curved spine
- Bowel and bladder problems
- Fluid buildup in the brain
- Problems breathing or swallowing
- Increased risk of severe infections like meningitis
- Sleep apnea
- Increased risk of wounds or sores on the feet, legs, buttocks or back
- Learning disabilities
- Vision problems
- Seizures
Treatment for spina bifida
Though there is no cure for the nerve damage that occurs with spina bifida once a baby is born, doctors are working on ways to minimize the nerve damage before birth. Prenatal testing (from blood tests to amniocentesis) can detect spina bifida mid-pregnancy and give parents the opportunity to take action before delivery.
For instance, doctors are performing surgery to repair spina bifida myelomeningocele in the womb, which may be able to reduce the risk for serious complications after a baby is born. But because prenatal surgery carries a risk of premature labor, it’s crucial to go over the pros and cons with your doctors.
If you know your baby has spina bifida during pregnancy, discuss a C-section with your health-care provider. Your practitioner may recommend you deliver at a hospital with doctors who are experienced with surgical procedures for spina bifida.
Usually no treatment is necessary for spina bifida occulta. For meningocele, doctors can surgically remove the cyst and repair the opening in the back.
For spina bifida myelomeningocele, doctors need to perform surgery within 24 to 48 hours after birth to reduce the risk of infection and protect the spinal cord from extra trauma. If fluid has built up in a baby’s brain, doctors can insert a shunt drain the fluid and prevent brain damage.
Whether a child with spina bifida has undergone surgery or doesn’t need it, she may need other types of treatment and ongoing care. Physical therapy can help babies and children with muscle weakness walk more independently, and some children may need regular evaluations to assess their bladder and bowel function. Children may also receive care from other specialists like occupational therapists, special education teachers, social workers and dietitians.
No matter the type or severity of the defect, children with spina bifida can get the care that they need to live full, happy lives.
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