Spina Bifida

Spina bifida is a type of neural tube defect that happens when a fetus’s spine and spinal cord don’t close properly during early pregnancy.

The neural tube forms the brain and spinal cord during embryonic development. When it doesn’t close, it leaves a gap in the spine. This gap can affect the vertebrae, spinal cord and nearby nerves. In more severe cases, a fluid-filled sac may stick out through the opening.

Symptoms range in severity. Your child may need surgery to repair the opening in their spine shortly after birth. In addition, treatment is available to help them manage symptoms throughout their lifetime.

Each year, about 1 in every 2,875 babies born in the U.S. has spina bifida. The exact cause of spina bifida isn’t known. But certain factors may increase the risk. There are ways to reduce the risk.

Types of spina bifida

There are three main types of spina bifida:

• Meningocele: A fluid-filled sac forms on the opening of the gap in the spine. It’s the least common type.
• Myelomeningocele: A fluid-filled sac that contains part of the spinal cord and nerves forms on the opening of the gap in the spine. It’s the most serious type.
• Spina bifida occulta: There’s a small gap in the spine, but it doesn’t cause a fluid-filled sac to form. Spina bifida occulta is the most common type.

Spina bifida symptoms

Symptoms vary based on the type, size and location of the gap in your child’s spine. They may include:

• Back pain
• Bowel and bladder issues
• Leg weakness
• Loss of feeling or sensation

If your child has a mild case, they may not notice any symptoms.

Spina bifida causes

The exact cause isn’t fully understood. Experts believe a combination of genetic and environmental factors may interfere with how the neural tube develops in early pregnancy. When this process doesn’t go as expected, it can result in conditions like spina bifida.

Risk factors of spina bifida

Talk to your provider to learn more about whether or not you’re at risk of having a child with this condition. For example, your child may be at higher risk if you:

• Don’t get enough folic acid
• Take certain medications (like some antiseizure medications)
• Have a condition like diabetes or obesity
• Have a high fever or overheat during early pregnancy

Your risk also increases if you have the condition or you’ve already had a child with a neural tube defect (genetics).

Your care team can help you manage these risks and have a healthy pregnancy.

Complications of spina bifida

Complications are more common with severe types and may include:

• Difficulty walking
• Hydrocephalus
• Learning disabilities (motor skills, memory, problem solving)
• Paralysis (legs)
• Scoliosis
• Tethered spinal cord

This condition may affect your child’s emotional health as they get older. Living with a chronic condition can be tough to manage day in and day out. They may find comfort in speaking with a mental health professional or joining a support group.

Spina bifida in adults

Adults who have spina bifida face different problems than children, including:

• Faster declining aging processes (loss of muscle strength and flexibility, less physical stamina, a decrease in sensory abilities)
• Spinal cord tethering
• Constipation or abdominal pain
• Orthopaedic issues (osteoporosis, early onset of arthritis, progressive back pain)
• Loss of skin sensation and poor circulation, inability to sweat, bruising and slow wound healing
• Latex allergy
• High blood pressure
• Obstructive and central sleep apnea (could lead to long-term damage to the heart)
• Obesity

Women with spina bifida are able to get pregnant, but their condition can make pregnancy more complex.

How doctors diagnose spina bifida

Healthcare providers may make a diagnosis during pregnancy (prenatal diagnosis). They’ll use the following tests:

• Alpha-fetoprotein blood tests
• Amniocentesis
• Ultrasound

If the fetus has a myelomeningocele, your provider may recommend delivering your baby via C-section. This prevents injury to that area of your child’s spine.

Tests to diagnose spina bifida

To diagnose the condition in children, providers will offer imaging tests to get a better view of their spine and spinal cord. These tests include:

• CT scan
• MRI
• Ultrasound

For mild cases where symptoms aren’t noticeable, you may not receive a diagnosis until adulthood. This could happen when you receive an imaging test of your spine for an unrelated reason and your provider notices a gap.

Spina bifida treatments

While there’s no cure for this condition, treatment options are available to manage symptoms. These may include:

• Medications for bladder and bowel issues, pain or other symptoms
• Physical therapy or occupational therapy
• Surgery

A healthcare provider will customize your child’s treatment plan to fit their specific needs.

Spina bifida surgery

There are different types of surgery to close the gap in your child’s spine. For severe cases, like myelomeningocele, this can be done during pregnancy. But this is most often done during the first few days after your child is born.

If there’s a sac outside of your child’s spine, a surgeon will drain it, repair the opening and close the surgical site. Your child’s surgeon will meet with you before the procedure and tell you what you can expect.

In many cases, children experience a complication where their spinal cord attaches to their spinal canal (tethered spinal cord) instead of floating freely. Surgery treats this as well.

Can you walk with spina bifida?

How this condition affects walking depends on where the gap is in your spine and how severe it is. If the gap is closer to your neck, walking independently may be difficult. If it’s lower near your hips, you may be able to walk with some assistance. In mild cases, it may not affect walking at all.

Mobility devices like braces, walkers or wheelchairs can help you move through daily life with more comfort and independence. Your care team will work with you to choose the right tools and teach you how to use them safely.

When should my child see their healthcare provider?

Your child will have several follow-up appointments with their surgeon after surgery. Your child’s surgeon will check the surgery site to be sure it’s healing well. They’ll also answer any questions you have about your child’s recovery.

This is in addition to regular wellness visits to see your child’s pediatrician to monitor their general health, growth and development.

Talk to your child’s care team about the frequency of visits that best support their needs.

What can I expect if my child has spina bifida?

Every child is different, and that’s especially true for a child with spina bifida. Here are some things to keep in mind as your child grows:

• Injuries: It may be difficult for your child to feel when they get a scrape or bruise on affected parts of their body. It’s important to check for injuries to make sure your child isn’t hurt.
• Mobility: Your child may need some assistance getting around safely. Devices like a wheelchair or walker are very helpful so they can be independent.
• Toilet training: Your child may not be able to feel when they need to go pee or poop. This can make toilet training challenging. Your child’s providers may have suggestions to prevent accidents and improve confidence.

If your child has spina bifida, talk to their care team about what to expect. They can answer your questions and connect you with helpful resources.

What is the life expectancy of a person with spina bifida?

Mild cases of spina bifida don’t affect life expectancy. But more severe forms may slightly shorten lifespan.

But life expectancy estimates are just that — an estimate based on other people’s experiences. If your child has spina bifida, ask their care team to explain if this condition could have an impact on their future.

How can I prevent spina bifida during pregnancy?

You may be able to reduce your risk of having a child with spina bifida if you:

• Avoid hot tubs or saunas (overheating).
• Boost your folic acid intake.
• Manage any conditions like diabetes.
• Talk with your provider about the medications you currently take (there may be an alternative).

Where can I find more information about spina bifida?

Like many other conditions, education about spina bifida and local support groups can be the greatest tools for managing the disorder and preventing further complications. These organizations will give you additional information on spina bifida:

• Spina Bifida Association of America
• March of Dimes National Office