Spina bifida life expectancy: how long do people live?

Life expectancy with spina bifida has improved dramatically, and in high-income countries most children born with it now live into adulthood, many into middle age and beyond. How long and how well a person lives depends mostly on the type and level of spina bifida, hydrocephalus and shunt problems, and how well the kidneys and bladder are protected. People with spina bifida occulta, the mildest form, usually have a normal life expectancy.

What is spina bifida?

Spina bifida is a birth defect in which the spine and the tissues around the spinal cord do not close completely. It is a neural tube defect: the neural tube, which becomes the brain and spinal cord, normally closes within about the first month of pregnancy, often before a person knows they are pregnant.

What are the types of spina bifida?

There are three main types of spina bifida, and they differ a great deal in severity.

Type	What happens	Typical effects
Spina bifida occulta	A small gap in the bones of the spine, covered by skin	Usually none
Meningocele	A sac of fluid and spinal cord coverings pushes through the gap; the cord itself stays in place	Often mild nerve problems
Myelomeningocele	The spinal cord and nerves are in an open sac on the back	Leg weakness or paralysis, bladder and bowel problems, hydrocephalus

Myelomeningocele is the most common serious form and is often called open spina bifida. When people talk about spina bifida life expectancy, they usually mean this type.

What is spina bifida occulta?

Spina bifida occulta is a small gap in one or more vertebrae that is covered by skin and usually causes no symptoms. It is often found by chance on an X-ray taken for another reason. Most people with it never know they have it and need no treatment.

Occasionally there is a sign on the skin over the lower back, such as a dimple, a tuft of hair, or a birthmark. A doctor may then order imaging to check for a tethered spinal cord, where the cord is abnormally attached and can be stretched as a child grows.

What is myelomeningocele?

Myelomeningocele is the most severe form of spina bifida, in which part of the spinal cord and nerves are exposed in a sac on the back at birth. The nerves below that level are damaged, which can affect movement and feeling in the legs, and control of the bladder and bowel.

The defect is usually closed surgically within the first few days after birth. Some centers offer surgery before birth for selected pregnancies, which studies have found can lower the need for a shunt in some babies, though it carries risks such as preterm birth.

Most babies with myelomeningocele also have hydrocephalus (a buildup of fluid in the brain) and a Chiari II malformation, where the lower part of the brain sits lower than usual and extends into the top of the spinal canal.

What is the life expectancy for someone with spina bifida?

There is no single life expectancy figure for spina bifida, because outcomes vary so much by type, lesion level, and the care a person receives. What is well established is that survival has improved enormously over the past several decades.

Before early surgery, shunts, and modern bladder care, many babies with myelomeningocele did not survive childhood. Today, in high-income countries, most survive to adulthood. Even so, people with open spina bifida still face a higher risk of serious illness and earlier death than the general population, so lifelong follow-up matters.

Researchers study these outcomes with survival analysis, which tracks how many people remain alive or free of a complication over time, and some are modeling survival across life stages in open spina bifida. An individual's outlook is best discussed with their own care team.

What affects long-term health in spina bifida?

A few factors have the biggest influence on long-term health and survival.

• Hydrocephalus and shunt problems. Most people with myelomeningocele have hydrocephalus, and many have a shunt, a thin tube that drains fluid from the brain to the abdomen. Shunts can block, break, or become infected at any age, even decades after they were placed. A shunt failure can be life-threatening if not treated quickly.
• Kidney and bladder function. Nerve damage often affects the bladder (neurogenic bladder). High bladder pressure, urine backing up, and repeated infections can damage the kidneys over time. Kidney failure was once a leading cause of death, and regular bladder emptying with a catheter (clean intermittent catheterization), medicines, and kidney monitoring have greatly reduced that risk.
• Lesion level. The higher the level on the spine, the more nerves are affected, and the more likely a person is to use a wheelchair or develop scoliosis (curvature of the spine) and breathing problems.
• Pressure injuries. Reduced feeling means skin damage from sitting or braces can go unnoticed and become deep and infected, so daily skin checks matter.
• Tethered spinal cord. It can cause new back pain, weakness, or bladder changes, especially during growth spurts.

What is life like for adults with spina bifida?

Many adults with spina bifida work, live independently or with some support, and have relationships and families. Needs vary widely, from people who walk without aids to full-time wheelchair users.

Adults may face new issues with age, including weight gain, high blood pressure, bone thinning, shoulder pain from wheelchair use, and depression or anxiety. A long-standing problem is the move from pediatric to adult care: many spina bifida clinics were built for children, and adults can lose regular follow-up. There is now a growing focus on adult spina bifida clinics and planned transition programs.

What causes spina bifida?

The exact cause of spina bifida is not fully understood, but it likely involves a mix of genetic and environmental factors. Known risk factors include:

• Low folate (folic acid) levels before and during early pregnancy
• A previous pregnancy affected by a neural tube defect, or a family history
• Certain anti-seizure medicines, especially valproate, taken during pregnancy
• Poorly controlled diabetes before pregnancy
• Obesity
• High body temperature in early pregnancy, such as from a fever

Most babies with spina bifida are born to parents with no known risk factors.

How can spina bifida be prevented?

Taking folic acid, a B vitamin, before and during early pregnancy lowers the risk of spina bifida and other neural tube defects. Because the neural tube closes so early, health agencies recommend that anyone who could become pregnant take 400 micrograms of folic acid daily, not just those planning a pregnancy.

People who have had a previous pregnancy affected by a neural tube defect are often advised to take a higher dose, set by their doctor. Many countries also add folic acid to flour or other grain products, which has been linked to fewer neural tube defects.

When to seek emergency care for shunt problems

Shunt malfunction is a medical emergency. Get help right away if a person with a shunt has:

• Severe or worsening headache
• Repeated vomiting
• Unusual sleepiness, confusion, or difficulty waking
• Vision changes or a seizure
• New weakness, or changes in walking, behavior, or school or work performance
• Redness, swelling, or fluid along the shunt path, especially with fever
• In babies: a bulging soft spot, rapidly growing head size, or unusual irritability

Breathing pauses, noisy breathing, or choking with feeds in a baby with Chiari II malformation also need urgent care.

Frequently asked questions

How common is spina bifida?

Spina bifida affects a few babies in every 10,000 births in the United States, and rates differ between countries. Spina bifida occulta is much more common, but because it rarely causes symptoms, it is often never diagnosed.

What vitamin prevents spina bifida?

Folic acid, a B vitamin, lowers the risk of spina bifida when taken before conception and in early pregnancy. The usual recommendation is 400 micrograms a day for anyone who could become pregnant, with higher doses for some people as advised by a doctor.

Can adults with spina bifida live a normal life?

Many adults with spina bifida live full, independent lives, though most need regular medical follow-up. The amount of support needed depends on the type and level of spina bifida and on other conditions such as hydrocephalus.