Spina bifida

KEY POINTS

  • Spina bifida is the most common kind of neural tube defect. These are conditions of the brain, spine and spinal cord.

  • Taking folic acid every day before and in the first few weeks of pregnancy can help reduce your risk for spina bifida and other neural tube defects.

  • If you’ve had a baby who had a neural tube defect, your risk for having another baby who has a neural tube defect is higher. 

  • Spina bifida can be diagnosed during pregnancy or after birth.

  • Spina bifida can cause health problems for your baby, such as fluid on the brain, paralysis (not being able to move parts of the body) and learning and developmental disabilities.

What is spina bifida?

Spina bifida means “split spine” or “open spine.” The spine (backbone) protects the spinal cord, the bundle of nerves that runs down the middle of your back. The spinal cord carries signals back and forth between your body and your brain. Spina bifida happens when the spinal cord or bones in the spine don’t form correctly, leaving a gap or opening. Spina bifida can happen anywhere along the spine.

Spina bifida is the most common kind of neural tube defect. These are conditions of the brain, spine and spinal cord. Birth defects are structural changes present at birth that can affect almost any part of the body. Spina bifida can affect how your baby’s brain, spine, spinal cord and meninges develop. Meninges are the tissues that cover and protect the brain and the spinal cord.

The neural tube starts out as a tiny, flat ribbon that grows into a tube. The neural tube usually closes in the first few weeks of pregnancy. In a baby who has a neural tube defect, the tube hasn’t closed completely.

About 1,400 babies are born with spina bifida in the United States each year. In this country, people who are Hispanic are more likely to have a baby who is affected by spina bifida than White or Black people.

Are you at risk for having a baby with spina bifida?

We don’t always know for sure what causes spina bifida, but certain things may play a role. We do know that some things may make you more likely than others to have a baby who is affected by spina bifida. These are called risk factors. Having a risk factor doesn’t mean for sure that your baby will be affected, but it may increase your chances.

Talk to your provider about things you can do to help reduce your risk for spina bifida:

Take folic acid. Folic acid is a B vitamin that every cell in your body needs for normal growth and development. Taking folic acid before and during early pregnancy can help prevent neural tube defects in your baby. 

Learn about your genes. Genes are the part of your body’s cells that store instructions for the way your body grows and works. Genes are passed from parents to children. Sometimes changes in genes can cause spina bifida and other conditions.

  • If you already have a child who is affected by a neural tube defect, you have a slightly higher risk of having another baby with the same condition.
  • If you are affected by a neural tube defect yourself, you’re more likely to have a baby who has spina bifida than a person who doesn’t have a neural tube defect.

If you, your partner, your children or someone in your families has a neural tube defect, you may want to see a genetic counselor. This is a person who is trained to help you understand about genes, birth defects and other medical conditions that run in families and how they can affect your health and your baby’s health. Most often, spina bifida occurs in people who don’t have any family history of the condition. 

Manage your health. Certain health conditions, such as diabetes and obesity, may play a role in spina bifida. If you have these or other health conditions:

  • Talk to your provider about how your condition affects your risk for spina bifida and other neural tube defects.
  • Get your health under control before you get pregnant. And get regular treatment to manage your condition during pregnancy.
  • Get to a healthy weight before pregnancy. Eat healthy foods and do something active every day.

Talk with your provider about medicines you take. This includes any prescription and over-the-counter medicines, supplements and herbal products. You may need to stop taking a medicine or switch to one that’s safer during pregnancy. For example, some anti-seizure medicines may increase your risk of having a baby who is affected by a neural tube defect. Here’s how to reduce your risk:

  • Tell your provider about any medicine or supplement you take before you get pregnant.
  • Don’t start or stop taking any medicine before or in the first few weeks of pregnancy without talking to your health care provider first.
  • Make sure any provider who prescribes you medicine knows you’re pregnant or trying to get pregnant.

Having a high body temperature (also called hyperthermia) in the first 6 weeks of pregnancy. This may be caused by fever or by spending time in a hot tub or sauna. Having a high body temperature may increase your chances of having a baby who has spina bifida. Here’s what you can do to help reduce your risk:

  • If you have a fever in the first 6 weeks of pregnancy, call your provider right away.
  • Don’t use hot tubs or saunas when you’re pregnant or if you’re trying to get pregnant.

What are the different types of spina bifida?

The four types of spina bifida are:

  1. Spina bifida occulta (also called hidden spina bifida). This is the mildest and most common form. It usually doesn’t cause health problems and you may never know your baby has it. In people who have this condition, the gap in the spine is small. The spinal cord and nerves stay in place and most often aren’t damaged. A dimple, hairy patch, dark spot or swelling may appear on the skin over the gap. If you see something like this at the bottom of your baby’s back, tell your baby’s health care provider.
  2. Closed neural tube defect. In people who have this condition, the fat, bone or meninges around the spinal cord don’t form correctly. This sometimes damages the nerves in the spinal cord. This condition often causes no symptoms, but some babies may have problems controlling their bladder and bowels.
  3. Meningocele. This is the rarest form of spina bifida. In this condition, the meninges push out through a gap in the spine. This creates a sac filled with fluid (called a meningocele) on the baby’s back. There’s usually little or no nerve damage, but some babies may have problems controlling their bladder and bowels. Surgery can remove the meningocele.
  4. Myelomeningocele (also called open spina bifida). This is the most severe form of spina bifida. In this condition, part of the spinal cord pushes out with the meninges through the opening in the spine to form a sac on the baby’s back. The spinal cord and nearby nerves are damaged. This can cause paralysis (when you can’t feel or move one or more parts of your body) and life-threatening infections. Babies who have this condition need surgery before birth or within the first few days of life. During surgery, a surgeon tucks the spinal cord and nerves back into the spine and covers them with muscle and skin. This can help prevent new nerve damage and infection. The surgery can’t fix any damage that’s already happened. Even with surgery, babies with this condition have lasting disabilities, such as problems walking and going to the bathroom.

How do you know if your baby has spina bifida?

Doctors can diagnose most types of spina bifida when you’re pregnant or after your baby is born. If you baby has spina bifida occulta, it may not be diagnosed until later in your baby’s life.

Diagnosing spina bifida during pregnancy

You may have prenatal tests to check your baby for spina bifida and other birth defects. Prenatal tests used to diagnose spina bifida include:

  • Maternal blood screening (also called quad screen). This blood test checks to see if your baby is at risk for certain birth defects, such as neural tube defects, heart defects and Down syndrome. The test is done at 15 to 22 weeks of pregnancy. If you have high levels of a substance called alpha-fetoprotein, your baby may have a neural tube defect such as spina bifida.
  • Amniocentesis. This test checks amniotic fluid taken from around your baby for birth defects such as neural tube defects. You can get this test at 15 to 20 weeks of pregnancy.
  • Ultrasound. This test uses sound waves and a computer screen to show a picture of your baby. Providers may see spina bifida with this test.

Diagnosing spina bifida after your baby is born

Sometimes providers diagnose spina bifida after a baby is born. If your baby’s provider thinks your baby has spina bifida, they may use one of these tests to get a clearer view of your baby’s spine:

  • Computed tomography (also called CT or CAT scan). CT scans use special X-ray equipment and powerful computers to make pictures of the inside of your baby’s body.
  • Magnetic resonance imaging (also called MRI). This test uses a large magnet and radio waves to make a detailed picture of the inside of your baby’s body.
  • X-ray. This test uses radiation to make a picture of your baby’s body.

How can spina bifida affect your baby’s health and how is it treated?

Spina bifida can cause several health problems, including:

Bowel problems. Bowel control can be a problem for people who have spina bifida. Feeding your baby certain foods to keep stools soft or giving your child foods with extra fiber may help make bowel movements more regular.

Chiari II malformation. This condition happens when the lower part of the brain sits in the upper part of the neck. Babies who have this condition usually have myelomeningocele. Some babies have:

  • Hydrocephalus. This is fluid buildup in the brain.
  • Weakness or stiffness in the arms and hands
  • Trouble feeding, breathing or swallowing

Hydrocephalus. Extra fluid in the head can cause it to swell and put pressure on the brain. In some cases, a surgeon needs to drain the extra fluid from a baby’s brain. The surgeon uses a shunt (a small hollow tube) that helps drain fluid and protects the brain from too much pressure. Hydrocephalus can cause intellectual and developmental disabilities.

Intellectual and developmental disabilities. These are problems with how the brain works that can cause people to have trouble or delays in physical development, learning, communicating, taking care of themselves or getting along with others. Children with spina bifida sometimes have problems with language, reading and math. They also may have trouble paying attention.

Latex allergy. Many babies who have spina bifida are allergic to latex (natural rubber). If your baby is allergic to latex, keep them away from items made of latex, such as latex bottle nipples, teething toys, changing pads, mattress covers and pacifiers. Your baby can wear a bracelet to let people know they have an allergy.

Meningitis. This is an infection that causes swelling in the brain and spinal cord. Meningitis can damage the brain and can be life-threatening. If your baby has meningitis, they may be treated with antibiotics.

Muscle weakness and joint pain. People who have spina bifida may have weak muscles and stiff joints because the nerves leading to the lower body are damaged. Surgery may help correct these conditions. Your baby may need physical therapy to help improve muscle weakness.

Paralysis. People who have spina bifida on the upper part of the spine may have paralyzed legs or feet. They may need to use wheelchairs. Those who have spina bifida lower on the spine (near the hips) may have more use of their legs. They may be able to walk on their own or use crutches, braces or walkers. Some babies can start exercises for the legs and feet to help them walk with braces or crutches when they get older.

Skin problems. People who have spina bifida can develop sores, calluses, blisters and burns on their feet, ankles and hips. But they may not know they have these problems because they may not be able to feel certain parts of their body. Check your baby’s skin often for redness. Your baby’s health care provider can recommend ways to help prevent skin problems, such as giving cool baths and changing your baby’s position often.

Tethered spinal cord. Normally, the bottom of the spinal cord floats freely in the spinal canal (the hollow space around the spinal cord). If the cord becomes attached (also called tethered) to the spinal canal, the cord stretches as your baby grows. The stretching can cause nerve damage in the spine. The tethered spinal cord can be treated with surgery. This condition affects babies who have myelomeningocele, meningocele and spina bifida occulta. Babies with a tethered spinal cord may have problems, including:

  • Back pain
  • Leg and foot weakness
  • Bladder or bowel control problems
  • A curved spine (also called scoliosis)

Urinary tract infections (also called UTIs). The urinary tract is the system of organs (including the kidneys and bladder) that helps your body get rid of waste and extra fluids in urine. Babies who have spina bifida often can’t control when they go to the bathroom because the nerves that help the bladder and bowels work are damaged. If your baby has problems emptying their bladder completely, it can cause UTIs and kidney problems. Your baby’s health care provider can teach you how to use a plastic tube called a catheter to empty your baby’s bladder.

Other conditions. Some people who have spina bifida have problems with:

  • Obesity (being very overweight)
  • Digestion (the process of how your body breaks down food after you eat)
  • Social and mental health conditions, including depression
  • Vision

What health care providers treat spina bifida?

Your baby may have a team of providers who work together to treat health conditions caused by spina bifida. The team can include:

Doctors who treat your baby’s condition and related complications, including:

  • A pediatrician who treats babies and children
  • A neurologist who treats problems of the nervous system, including the brain, spinal cord and nerves
  • An orthopedist who treats injuries and diseases of the bones, joints, ligaments, tendons, muscles and nerves
  • A psychiatrist who treats people with emotional or mental health problems, like depression
  • A urologist who treats problems of the urinary tract (kidneys, bladder, ureters and urethra)

Other providers, including:

  • A developmental therapist who helps people develop behavior and social skills
  • An occupational therapist who helps people do everyday activities, such as holding and letting go of things, getting dressed and feeding themselves
  • A physical therapist who creates exercise programs to help improve strength and movement
  • A psychologist who takes care of people’s emotional and mental health 

More Information

See also: Neural tube defects

Last reviewed: July, 2021