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What is spina bifida? — Spina bifida is a problem a baby is born with that involves the 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 babies have spina bifida, the bones of the spine don't form normally. As a result, these babies have an opening in their skin in the middle or lower part of the back. The spinal cord (the bundle of nerves that run down the back) and the covering around the spinal cord stick out of the opening, forming a sac on the baby's back (figure 1).
Spina bifida leads to different problems. The exact problems will depend on your child's individual 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 bowel
●Problems with learning, attention, or memory
Most children with spina bifida also have a condition called hydrocephalus, which 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 period of time, and can put pressure on the brain.
What causes spina bifida? — Doctors don't usually know what causes spina bifida. But they do know that spina bifida can happen when a pregnant woman doesn't get enough folic acid during pregnancy. Folic acid (also called folate) is a vitamin needed for the baby's spine and other parts of the body to develop normally.
Is there a test for spina bifida? — Yes. In the fourth month of pregnancy, women can have a blood test that checks how likely it is that their baby has spina bifida. If this test shows it's likely their baby has spina bifida, the doctor will order a test called an ultrasound. An ultrasound uses sound waves to check how a baby is growing and how their organs are developing. It can show whether a baby has spina bifida. Some women have an ultrasound without having the blood test.
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 defect before the baby is born. This surgery has risks for both the mother and baby.
Some women who find out their baby has spina bifida might choose to end their pregnancy. Women who choose to continue the pregnancy need to see their doctor more often than other pregnant women 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 delivery. Babies with spina bifida should be delivered in a hospital or center that has experience treating this condition.
How is spina bifida treated after birth? — Soon after birth, your baby will need surgery to close the opening in their back. 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.
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 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 testing 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 help prevent spina bifida, a woman should start taking a daily multivitamin with folic acid or prenatal vitamin before she gets pregnant. That's because by the time a woman finds out she is pregnant, her baby's spine and nervous system have already started to develop.
Women who take medicines called anti-seizure medicines 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. Children who are born with spina bifida are healthier and living longer today than they did only a few decades ago.
To help your child stay as healthy as possible, it's important to 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 need treatment.
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: C-section (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)
