Spina Bifida: Causes, Types, and Treatment

Medically Reviewed by Jabeen Begum, MD on April 24, 2024
Written by Kim Painter, Kathryn Whitbourne
10 min read

Spina bifida is a condition that affects the spine and is present at birth. The term literally means "split spine" in Latin.

The condition develops before birth when the neural tube (a group of cells that form the brain and the spinal cord) doesn't close all the way. When that happens, the backbone that protects the spine doesn't form completely. This can cause physical issues and, in some cases, lead to problems with the brain and learning.

Who gets spina bifida?

Of the 4 million babies born in the U.S. every year, about 1,500 to 2,000 newborns have spina bifida. It's most common among white and Hispanic babies as well as in girls. Today, 90% of babies with the condition can expect to live to be adults.

There are three main types of spina bifida:

Spina bifida occulta (SBO). This is the most common and mildest form. Many people don't even know they have it. ("Occulta" means "hidden" in Latin.) Here, the spinal cord and nerves are usually fine, but there might be a small gap in the spine. People often find out they have SBO when they get an X-ray for some other reason. This type doesn't typically cause any disability.

Meningocele. This rare type of spina bifida happens when a sac of spinal fluid (but not the spinal cord) pushes through an opening in the baby's back. Some people have few or no symptoms, while others have problems with their bladder and bowels.

Myelomeningocele. Also called open spina bifida, this is the most severe type of spina bifida. Here, the baby's spinal canal is open in one or several places in the lower or middle back, and a sac of fluid pokes out. This sac also holds part of the spinal cord and the nerves, and those parts get damaged.

With spina bifida occulta, the most obvious sign might be a tuft of hair or a birthmark at the site of the gap. With meningocele and myelomeningocele, you can see the sac poking through the infant’s back. In meningocele, there may be a thin layer of skin over the sac.

In myelomeningocele, there’s usually no skin covering, and the spinal cord tissue is out in the open. Other associated symptoms can include:

  • Weak leg muscles (in some cases, the infant can’t move them at all)
  • Unusually shaped feet, uneven hips, or a curved spine (scoliosis)
  • Hydrocephalus (a buildup of cerebrospinal fluid in brain cavities), a condition which in infants can cause an enlarged head, a bulging soft spot on top of the head, and effects on brain functioning
  • Seizures
  • Bowel or bladder problems

Children also might have trouble breathing, swallowing, or moving their upper arms. They also might be overweight. The symptoms depend a lot on where the problem is in the spine and which spinal nerves are involved.

There's no clear cause for spina bifida. But scientists believe a combination of environment, genes, and nutrition during pregnancy can play a role.

In addition to being more common among white, Hispanic, and female babies, the condition is linked to several risk factors:

Low folate/folic acid. Thedevelopment of the neural tube depends partly on adequate levels of folate, or vitamin B9. It is found naturally in some foods and in synthetic form as folic acid, which is added to supplements and fortified foods. When levels are low in a pregnant person's body, the risk of spina bifida increases.

Some medicines. Taking some medicines during pregnancy, including the seizure drug Depakote, may increase the risk.

Diabetes. Having diabetes that isn't well controlled during pregnancy may increase the risk for spina bifida.

Obesity. Someone who is obese when they get pregnant has an increased risk of having a baby with spina bifida. 

High body temperatures. Some research suggests that exposure to high temperatures early in pregnancy -- from a fever or using a sauna or hot tub -- might increase spina bifida risk.

Is spina bifida genetic?

Spina bifida is more common in babies with a family history of the condition, which raises the possibility that inherited gene differences are involved. Research so far suggests that dozens of genes may be involved. The best studied of these genes is involved in processing folate.

Spina bifida is often diagnosed before birth with tests that many pregnant people choose to have to screen for several conditions. It's important to talk with your doctor about which, if any, of these tests you want and how you might use the results.

Spina bifida ultrasound

An ultrasound is the most accurate way to diagnose spina bifida before birth. It's more likely to detect the condition if it's done in the second trimester (at 18-22 weeks of pregnancy) than if it's done earlier. 

During the test, high-frequency sound waves bounce off tissues in your body to make black-and-white pictures of the baby on a computer monitor. If your baby has spina bifida, you may see an open spine or a sac poking out of the spine.

Other tests

Blood test. Though less accurate than ultrasound, a sample of the pregnant person's blood can be tested to see if it has a certain protein called AFP that the baby makes. If the level of AFP is very high, it could mean the baby has spina bifida or another neural tube problem. But sometimes, follow-up blood tests and ultrasounds find no issues.

Amniocentesis. If the blood test shows a high level of AFP, but the ultrasound looks normal, your doctor may recommend amniocentesis. This is when your doctor uses a needle to take a small amount of fluid from the amniotic sac around the baby. If the AFP level in that fluid is high, that can indicate spina bifida.

Fetal MRI. If other tests find signs of spina bifida, this imaging test can get detailed pictures of the spine and brain to look for the type of spina bifida and possible complications.

Sometimes, spina bifida is diagnosed after a baby is born. That's more likely if there was no prenatal testing or an ultrasound didn't show any problems.

The mildest forms of spina bifida may need no treatment. The main treatment for more serious types is surgery. Additional treatments and support may be used to manage complications and improve a person's ability to move and do other things.

Spina bifida surgery

Surgery might happen at several different points.

Fetal surgery. Doctors can operate on some babies while they're still in the womb. Before the 26th week of pregnancy, the surgeon may be able to sew shut the opening over the baby's spinal cord. Children who have this type of surgery seem to have fewer disabilities. But it is risky for the pregnant person and increases the risk of the baby being born too early.

Newborn surgery. Another option is surgery shortly after birth, often in the first 24-48 hours. If the baby has meningocele, the surgeon will put the membrane around the spinal cord back in place and close the opening.

If the baby has myelomeningocele, the surgeon will put the tissue and spinal cord back inside the baby's body and cover it with skin.

If the baby has extra fluid in the brain (hydrocephalus), the surgeon will put a hollow tube into the baby’s brain called a shunt to redirect the fluid to another part of the body to be reabsorbed.

Later surgeries. These may be needed to correct problems with feet, hips, or the spine or to replace the shunt in the brain. Surgery may also be needed to fix something called progressive tethering, which is when the spinal cord gets fastened to the spinal canal, instead of floating freely, as it usually does. This happens in some children with myelomeningocele. As the child grows, the tethered spinal cord can stretch, causing a loss of muscle and bowel or bladder problems if it's not corrected.

Mobility assistance

Some babies with spina bifida will start special exercises early in life to prepare their legs for walking with braces or crutches. Others will eventually use walkers or wheelchairs.

Managing complications

Children with spina bifida may be monitored and treated, as needed, for various complications, including problems with their bladders and bowels. For example, some will need catheters to pee, and some will need regular enemas, suppositories, or medicines they take by mouth to poop regularly. Sometimes, surgery is needed to manage such issues.

As they grow, children may see many specialists,  including neurologists, urologists, orthopedic specialists, physical therapists, and occupational therapists. Some will benefit from special education.

Studies show that taking a multivitamin with folic acid can prevent spina bifida and lower your baby’s odds of having this and other conditions. Anyone who’s pregnant or trying to get pregnant should get 400 micrograms a day. If you have spina bifida, or have a child with spina bifida, you should get 4,000 micrograms per day at least 1 month before you get pregnant through the first few months.

It's also a good idea to eat foods naturally high in folate, such as dark green vegetables and egg yolks, as well as foods enriched with folic acid, including many breads, pasta, rice, and breakfast cereals.

Also, if you are thinking of getting pregnant:

  • Talk to your doctor about any medications or supplements you take.
  • Try to manage conditions such as diabetes and obesity.
  • Avoid overheating your body in a sauna or hot tub.
  • Take fever-reducing medicine, such as acetaminophen, if you get a fever.

With treatment and support, many people born with spina bifida live well into adulthood. Their needs change with age.

Babies and toddlers

Your baby or toddler with spina bifida, especially if they have open spina bifida, may need surgery, physical therapy, and other special care. You might want to look into early intervention services for children with disabilities, available for free in many U.S. communities.

Also, you can help your child develop by engaging in the same kind of activities you'd do with any young child -- such as going to parks and playing with toys. You can help keep your baby safe by regularly checking their skin for sores and redness -- keeping in mind that the child might not be able to feel pain on the parts of their body affected by spina bifida.

As your child grows toward preschool age, you can encourage their independence. For example, you might encourage them to help clean up their toys and choose their clothing. You can also teach them about their bodies, including their spina bifida.

Kids

Many children with spina bifida do well in school. But some have learning problems, especially if they have hydrocephalus. They might work slowly and have trouble paying attention and making decisions. Parents can work with schools to come up with plans to accommodate and support their child.

Your child also might have trouble controlling when they pee and poop. So, they should have plans and techniques for using the bathroom away from home. Your health care team can help develop these plans.

Teens

Most teens with spina bifida dress and bathe themselves, know how to manage their bathroom needs, and get around their homes and communities on their own. Some can drive, but they may need modified vehicles.

Teens may want to speak with their health care providers about sexual functioning, which can be affected by nerve damage. Most people with spina bifida are fertile, so talking about birth control is important, too.

Some teens will feel isolated and depressed and can benefit from mental health counseling.

Adults

Adults with spina bifida can manage much of their own care. That might include finding new doctors who treat adults, keeping track of their medications and supplies, and knowing how to get urgent medical help when needed.

To stay active, some might participate in sports or teams that might include others with or without disabilities.

Those capable of getting pregnant should start taking daily folic acid even if they aren't planning a pregnancy right away.

Spina bifida, which develops before birth, can have serious lifelong complications. But many of the health and developmental problems associated with the condition can be managed with surgery, therapy, and practical support. Most babies born with spina bifida today will live to be adults.

Can you live a normal life with spina bifida?

Until a few decades ago, most babies born with open spina bifida were not able to survive. Now, most survive and do most of the things other children do, such as going to school and becoming more independent as they grow up. Some go to college, and some have jobs. (Though, in general, employment rates for people with disabilities are much higher than for those without disabilities). Adults with spina bifida also usually have medical problems related to their condition, such as pain, skin problems, and urinary tract infections.

Does spina bifida get worse with age?

Some aspects might get worse. When nerve damage causes muscle weakness and a loss of feeling, people may lose some strength, sensation, and movement abilities as they age. Spina bifida clinics that specialize in the treatment of adults can help manage such challenges.