Patient education: Spina bifida (The Basics)

What is spina bifida? — Spina bifida is a problem that affects a baby's spine (backbone). In spina bifida, the spine doesn't form normally when the baby develops in the mother's uterus.

Spina bifida is a type of problem called a "neural tube defect." There are different kinds of neural tube defects and different forms of spina bifida. This article discusses the most serious form of spina bifida, which is also called "open spina bifida" or "myelomeningocele."

When a baby has spina bifida, the spine and spinal cord (the bundle of nerves that run down the back) do not form normally. The cord and its covering push out through a gap between the bones of the spine. This forms a sac that sticks out through an opening in the skin in the middle or lower back (figure 1).

Spina bifida leads to different problems. The exact problems will depend on your child's situation. But in general, spina bifida can cause:

●Weakness of the legs, or being unable to move the legs

●Loss of feeling in the legs or lower half of the body

●Problems with the feet, knees, hips, legs, or spine

●Problems controlling the bladder or bowels

●Problems with learning, attention, or memory

Most children with spina bifida also have a condition called "hydrocephalus." This is when there is too much spinal fluid in the brain. Spinal fluid is the fluid that surrounds and protects the brain and spinal cord. Hydrocephalus can make a baby's head get bigger over a short time, and can put pressure on the brain.

What causes spina bifida? — Doctors usually don't know why a baby has spina bifida.

But doctors do know that spina bifida can happen when a person doesn't get enough folic acid very early in pregnancy. Folic acid (also called folate) is a vitamin. It is needed for the baby's spine and other parts of the body to develop normally.

Is there a test for spina bifida? — Yes. At 18 to 22 weeks of pregnancy, your doctor will probably do an ultrasound. An ultrasound is an imaging test. It uses sound waves to create pictures of your baby. Doctors use ultrasound to check how your baby is growing and how their organs are developing. This can show whether a baby has spina bifida.

There is also a blood test that checks how likely it is that your baby has spina bifida. If you have this test, it will happen around 16 weeks of pregnancy.

After birth, a doctor can tell whether a baby has spina bifida by doing an exam.

How is spina bifida treated during pregnancy? — Some specialized medical centers offer "fetal surgery." This involves fixing the hole in the skin before the baby is born. This is done in the second trimester of pregnancy. Fetal surgery might result in fewer nerve and muscle problems after birth. But it does come with risks for both the mother and baby. Also, the baby might still need more surgery after birth.

Some people who find out that their baby has spina bifida might choose to end the pregnancy.

Those who choose to continue the pregnancy need to see their doctor more often than other pregnant people do. They also need to have ultrasounds and other tests more often. These tests check to see how the baby is growing, how big the spina bifida sac is, how big the baby's head is, and whether there is any extra fluid in the brain. This information can help the doctors plan for a safe birth.

Babies with spina bifida should be born in a hospital or center that has experience treating this condition.

How is spina bifida treated after birth? — If fetal surgery was not done, your baby will need surgery to close the opening in their back soon after birth. Until the surgery can be done, the doctor will keep this open area covered and protected. They will also give your baby antibiotics to prevent an infection. Even if fetal surgery was done, more surgery might be needed after birth.

Babies with spina bifida are checked for hydrocephalus:

●To check for hydrocephalus, the doctor will order an imaging test such as an ultrasound, CT scan, or MRI. These tests all create pictures of the baby's brain. Your doctor will decide which test to use. The doctor or nurse will also measure the size of your baby's head every few days.

●Babies who have hydrocephalus are usually treated with a device called a "shunt" (figure 2). A shunt is a long tube that goes in the fluid-filled space in the brain. The tube is placed under the skin and empties into the belly or heart. It helps drain extra spinal fluid from the brain.

Other treatments will depend on the problems that your child has from their spina bifida. Treatment for spina bifida is life-long. Many children with spina bifida:

●Use a wheelchair or wear leg braces to help them walk

●Use a tube called a catheter to help them empty their bladder, if their bladder doesn't work normally – This helps prevent infections and kidney damage.

●Have surgery to fix problems with their spine or legs

●Have tests to check whether they have learning problems – Some children with learning problems need a special learning plan for school.

Can spina bifida be prevented? — Getting enough folic acid during pregnancy can prevent some cases of spina bifida.

To lower your risk of having a baby with spina bifida, start taking folic acid before getting pregnant and for the first 3 months of pregnancy. That's because by the time you find out that you are pregnant, the baby's spine and nervous system have already started to develop. You can take a daily multivitamin with folic acid or a prenatal vitamin.

If you take "anti-seizure" medicines, you might need extra folic acid. That's because anti-seizure medicines can lower the amount of folic acid in the body.

What will my child's life be like? — It depends on your child's individual situation. Most children born with spina bifida live into adulthood. While they might not live as long as people without spina bifida, with the right care, most people can have a full and healthy life.

To help your child stay as healthy as possible, work closely with their team of doctors, nurses, and other professionals. Follow their instructions about visits, tests, and treatments. Let them know if you see any changes in your child's symptoms or health. These could be caused by problems from the spina bifida and might need treatment.

More on this topic

Patient education: How to plan and prepare for a healthy pregnancy (The Basics)
Patient education: Prenatal care (The Basics)
Patient education: Nutrition before and during pregnancy (The Basics)
Patient education: Cesarean birth (The Basics)
Patient education: Abortion (The Basics)
Patient education: Epilepsy and pregnancy (The Basics)

Patient education: C-section (cesarean delivery) (Beyond the Basics)
Patient education: Abortion (pregnancy termination) (Beyond the Basics)