Andrea is 12 years old and in the 6th grade. She likes to go swimming, play with her dog, and have friends over. She’s been in three dance recitals, and she even received a standing ovation once. She’s traveled to Canada and many places in the United States, and next summer she hopes to go to Scotland. When she’s older, Andrea wants to be a chef.
Like you, Andrea is interested in many things and can do a lot of stuff. What might be different from you, though, is the fact that Andrea can’t walk. Andrea has spina bifida (say: SPY-nuh BIH-fuh-duh) and uses a wheelchair to get around.
What Is Spina Bifida?
Someone born with spina bifida has an opening in the spine. A healthy spine is closed to protect the spinal cord, a bundle of nerves that sends messages back and forth between your brain and the rest of your body. The messages tell your muscles to move so you can kick a soccer ball or pick up a pencil. The messages also tell you about sensations on your skin, so you know to pull your hand away from a hot pot.
When a baby is growing inside its mother, the spine and spinal cord are developing. But sometimes part of the spinal cord and spine don’t grow the way they should, leaving an opening where the spinal cord may stick out of the body. When this happens, a baby is born with spina bifida, a term that means “split or open spine.”
Because of the opening in the spine, the nerves of the spinal cord may be damaged. A spinal cord that’s damaged may not be able to do the important job of getting messages to and from the brain. Usually when your brain says “kick the ball,” the nerves of your spinal cord carry that message that tells your leg to kick.
These messages may not be able to get through if a person has spina bifida. The person may have weakness or may not be able to move their muscles the way other people do. This is called paralysis (say: puh-RAL-uh-sis), which means a person can’t move some muscles or feel things on some parts of the body.
What Are the Different Types of Spina Bifida?
One kind of spina bifida can go unnoticed. With spina bifida occulta (say: uh-KUL-tuh), the opening in the person’s back is covered by muscle and skin and the spinal cord is usually normal. There may be some problems with the spine, or there may be no problems at all.
Another type of spina bifida is called meningocele (say: meh-NIN-guh-seel). This involves the meninges, the membranes that cover the brain and spinal cord. Meningocele is the name used when just the meninges — no nerves — push through the opening in the vertebrae (the bones of the spine). The meninges form a fluid-filled sac that is usually covered with skin. The brain and the spinal cord are normal and a person with a meningocele usually has no problems. Sometimes surgery is needed to repair the meningocele and prevent an infection called meningitis.
When most people talk about spina bifida, though, they mean myelomeningocele (say: my-uh-low-meh-NIN-guh-seel), from words meaning “spine” and “swelling.” In this type, the baby is born with a sac sticking out from the opening in the spine. This sac contains nerves and part of the spinal cord. About 1 in 1,000 babies born in the United States has this type of spina bifida.
Because the spinal cord hasn’t developed normally and some nerves may have been damaged, a person with myelomeningocele will have some paralysis, as well as a loss of feeling in their legs.
The amount of paralysis will vary, depending on where the opening is on the back. The lower down the back the opening is, the fewer nerves are affected and the less paralysis there is. This is why some kids with spina bifida can walk and some can’t. To help them get around, kids might use crutches, leg braces, or wheelchairs.
Andrea, our dancer, was born with an opening in her lower back, just below her waist. She can move her legs but not her feet and ankles. Her skin has feeling only down to her knees. When Andrea was younger she walked with braces and crutches, but now she uses a wheelchair.
Like many other kids with myelomeningocele, Andrea also has hydrocephalus (say: hi-dro-SEF-uh-lus). This happens when there’s too much fluid in the brain. Some people with spina bifida may have learning problems, but most have normal intelligence.
Most kids with spina bifida have some problems with their bowels and bladder. The nerves that send and receive messages from the brain can’t do their job, so it’s hard for kids to know when they need to go to the bathroom.
Why Do Kids Have Spina Bifida?
No one is really sure why some kids are born with spina bifida, but doctors and scientists have found some possible reasons.
They’ve learned that folic (say: FOLE-ik) acid is very important, especially when a baby is growing inside its mother. Folic acid is one of the B vitamins found in foods like broccoli, spinach, egg yolks, and oranges.
If a woman doesn’t have enough folic acid in her diet while she’s pregnant, she may be more likely to have a baby with spina bifida. Luckily, special vitamins containing folic acid are available for pregnant women.
A woman who has a high fever early in her pregnancy also may be at higher risk of having a baby who has spina bifida. Scientists are also studying the roles that genes, certain chemicals, and medicines might play in causing spina bifida.
What Do Doctors Do?
From the moment Andrea was born, doctors have been an important part of her life. When she was just a few hours old, she had her first surgery. Doctors gently pushed her spinal cord back inside her body through the opening on her back, and then closed the opening.
When she was 2 days old, the doctors put in a shunt, a device that drains the extra fluid in the brain. Since then, Andrea has had several operations, mostly to replace her shunt. In addition to surgery to keep her shunt working, a kid with spina bifida might need surgery on the feet, hips, or spine.
Kids like Andrea also need checkups a couple of times a year and may see a team of medical people. This team may include pediatricians, orthopedists, surgeons, physical therapists, and occupational therapists. They want to help the person to be healthy and as independent as possible.
What Is Life Like for Kids With Spina Bifida?
Living with spina bifida isn’t exactly the same for each kid who has it. But for most kids, it means taking extra care of their bodies and paying attention if something seems wrong. It can mean taking longer to do things, because braces, crutches, and wheelchairs just aren’t as fast as walking and running.
But as Andrea has shown, that doesn’t mean she can’t do exactly what she wants to do!
Reviewed by: Manish Shah, MD
Date reviewed: October 2014