Spina Bifida in Utero

Spina bifida is the most common neural tube defect. It is an inborn condition affecting the spinal cord that is usually visible at birth.

Most spina bifida cases are mild, but in rare instances, spina bifida can be severe, causing damage to the spinal cord and nerves.

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On this page:  

• What Is Spina Bifida in Utero? 
• What Are the Symptoms of Spina Bifida in Utero? 
• How Do You Diagnose Spina Bifida in Utero?
• How Do You Treat Spina Bifida in Utero? 

What Is Spina Bifida in Utero? 

Doctors define spina bifida as a split or open spine. It is the most common defect of the neural tube that develops to become the spine.

The spinal column is made up of vertebrae (bones of the back) that protect the spinal cord (the bundle of nerves that carries signals between your brain and your body).

Spina bifida occurs when the vertebrae don’t form properly around the spinal cord while the baby develops in the womb. This gap or opening in the vertebrae can occur anywhere along the spine and can result in a sac of fluid forming on the baby’s back.

In severe cases of spina bifida, the spinal cord may be pushed through the gap, causing damage to both the spinal cord and nerves. This can result in serious disability and brain damage.

In mild cases, spina bifida may only show as a dimple, birthmark, or hairy spot on the back.

Many people with spina bifida don’t even know they have it until they have an x-ray of their back for unrelated issues.

How common is spina bifida?

Spina bifida occurs in 1 of every 2,875 births in the U.S. each year. About 166,000 people in the U.S. have this health condition.

What are the types of spina bifida?

The three most common types of spina bifida are:

• Spina bifida occulta — There's a gap present in the spine, but no sac or opening appears on the back. For this reason, it's sometimes referred to as “hidden spina bifida.” Spina bifida occulta is the most common and mildest form of spina bifida and often goes unnoticed until late childhood or adulthood.
• Meningocele — There's an opening of the vertebrae with a sac of fluid pushing through the skin of the back, but the spinal cord isn't in the sac. Meningocele can result in minor physical disabilities, but there's usually little to no nerve damage to the spinal cord.
• Myelomeningocele — The most severe form of spina bifida, there's a gap in the vertebrae where the spinal cord has pushed into a sac of fluid on the back. Because the spinal cord and nerves are out of place, myelomeningocele causes moderate to severe disabilities, like an inability to move the legs.

What causes spina bifida?

Doctors don't know what causes spina bifida exactly, but research points to a combination of genetic and environmental factors.

What are spina bifida risk factors and complications? 

If you've had a baby with spina bifida, you're at risk of having more children with the condition.

Spina bifida risk factors

Risk factors for spina bifida include:

• Diabetes — If you have diabetes, speak with your doctor about fine-tuning your diabetes care before you get pregnant to ensure you and your baby stay healthy.
• Drinking alcohol — Consuming any amount of alcohol while you're pregnant can affect your baby’s health.
• Fever — High body temperature could raise your baby’s risk of spina bifida. Avoid saunas or hot tubs in the first weeks of pregnancy.
• Lack of folic acid — Folic acid is important in neural tube development. Since 1998, when common breakfast cereals, breads, tortillas, and rice became fortified with folic acid, cases of severe spina bifida have decreased by 70%. Take a daily supplement with at least 400 mcg of folic acid every day starting even before you try to get pregnant.
• Particular medications — Medications for seizures or acne can be linked to common birth abnormalities. Speak with your doctor if you're taking any of these kinds of medications before you get pregnant.
• Weight management — Speak with your doctor about what weight is healthiest for you and try to maintain that weight throughout your pregnancy.

Complications of spina bifida 

Left undiagnosed or untreated, spina bifida can result in severe disabilities.

Damage to the baby’s spine and spinal cord could result in:

• Bladder or bowel problems, such as leaking pee or having a hard time pooping.
• Hydrocephalus, which is a fluid buildup in the brain. Even when it's treated, hydrocephalus may cause seizures and learning or vision problems.

How can I prevent spina bifida?

There's no way to prevent spina bifida because doctors don't know its cause. If your baby is born with spina bifida, it's not because of something you did or didn't do.

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What Are the Signs and Symptoms of Spina Bifida?

Mild cases of spina bifida may not have any signs or symptoms, or only a dimple, birthmark, or hairy spot on the back. Many people with spina bifida don’t even know they have it until they have an x-ray of their back for unrelated issues.

Severe cases of spina bifida are present at birth and obvious to the naked eye. There will be a sac on the baby’s back filled with fluid or even the spinal cord.

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How Do You Diagnose Spina Bifida? 

While you're pregnant, there are three tests you can have to help detect spina bifida and other health issues in your developing baby.

They are:

• Blood test (AFP) — This second-trimester blood test screens for open neural tube defects.
• Ultrasound (sonogram) — This imaging test can show if your baby has an open spine or other spina bifida signs.
• Amniocentesis — If other test results suggest a birth abnormality, you can choose to have this prenatal test to confirm if your baby has spina bifida.

After you give birth, a doctor usually can tell if the baby has spina bifida simply by how the baby’s back looks. If they suspect spina bifida, your doctor may order an x-ray, MRI, or CT scan to better understand its severity and decide the best next steps.

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How Do You Treat Spina Bifida? 

Treatment for spina bifida depends on the severity of the condition. If your child has spina bifida occulta, they may not need treatment, or they may only need physical and/or occupational therapy.

If your child has a meningocele or myelomeningocele, surgery may be an option to treat your child’s spina bifida. Spina bifida surgery can sometimes be performed on the baby while it is still in utero (in the womb). Surgery also may be performed later as the child grows to help improve mobility and manage problems as they arise.

Surgery for spina bifida

Treatment for myelomeningocele often requires surgery, which usually is done soon after birth to prevent further damage to the spinal cord. Sometimes, however, surgery can be performed while still in utero (before the baby is born) to correct particularly severe spina bifida.

Babies with meningocele may need surgery, too. A baby with hydrocephalus — a spina bifida complication — will need surgery to put in a drainage tube called a shunt. The shunt relieves pressure on the brain by draining excess fluid into the belly. This procedure prevents swelling in the brain from causing more damage.

Therapy for spina bifida

Physical therapists and occupational therapists can work with children with severe spina bifida, starting as soon as the baby is born. These experts can teach parents and caretakers exercises and activities to do with the child.

Can children with spina bifida lead normal lives?

Children with spina bifida grow to get around in different ways, depending on the location of their neural tube defect.

When the spina bifida is higher on the spine, near the head, a child may have paralysis in the legs. A child with spina bifida lower on the spine, near the hips, may have more use of their legs.

Some children may need crutches, braces, wheelchairs, walkers, or other aids to maximize their mobility. Others may need no assistance at all.

Other potential health issues from spina bifida

Children with spina bifida may have incontinence (lack of bladder or bowel control) and may need help using a catheter each day to prevent urinary tract infections (UTIs) and kidney damage. To prevent bowel problems, parents usually begin working with their provider on managing bowel care as soon as their baby starts eating solid foods.

Kids with spina bifida can also develop skin issues due to limited sensation in some parts of the body.

Some children with spina bifida also have problems like:

• Learning differences.
• Trouble relating to others.
• Vision issues.
• Weight gain.

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Why Choose UPMC for Spina Bifida in Utero Care?  

Surgeons at UPMC Children’s Hospital of Pittsburgh close spina bifida defects in 10 to 20 infants each year following delivery. 

Surgeons at UPMC Magee-Womens Hospital also close spina bifida defects in fetuses while they are still in utero.

Using an interdisciplinary team of specialists in maternal-fetal medicine, obstetric anesthesiology, neonatology, and pediatric neurosurgery from UPMC Magee and UPMC Children’s, doctors at the UPMC Center for Innovative Fetal Intervention have successfully performed in-utero spina bifida repair surgery as early as 25 weeks’ gestation. 

Although risky, the surgery to close spina bifida in-utero has been shown to provide better neurologic outcomes than surgical treatment after birth. A study published in the New England Journal of Medicine revealed that fetal surgery led to enhanced leg function and a 50% reduction in the risk of hydrocephalus, a frequent complication of spina bifida compared with surgery after birth.

By UPMC Editorial Staff. Last reviewed on 2024-09-05.