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 protrude outside 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 not be able to move their muscles the
way other people do. This is called paralysis (say: puh-
ra
-luh-sis), which means a person can't move some muscles or to
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
-jo-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 meninges form a fluid-filled sac that is usually covered with
skin. The spinal cord is normal and a person with a meningocele
usually has no problems. A person with meningocele will need
surgery to prevent any nerve damage later.
When most people talk about spina bifida, though, they mean
myelomeningocele
(say: my-uh-low-meh-
nin
-jo-seel), from words meaning "spine" and
"swelling." In this type, the baby is born with a sac
protruding 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-
seh
-fuh-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:
foh
-lik)
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:
Michael A. Alexander, MD
Date reviewed: October 2008
Note: All information is for educational purposes only. For specific medical advice,
diagnoses, and treatment, consult your doctor.
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