A closer look at Spina Bifida

Jen and Deb have been best friends since first grade. They do everything together. It’s like they’re joined at the hip. Their likes and dislikes are identical. They are one person in separate bodies!

There is, however, one slight difference between these VBs. Deb gets around using her legs while Jen uses wheels!

Jen is 15 years old now and in the 10th grade. Like many teenage girls, she likes to go swimming, play the piano and hang out at with friends. Jen has been in three dance recitals, and she even received a standing ovation once. She has traveled to Europe and many places in the United States. Next summer Jen hopes to go to India. Jen plans to be a lawyer when she’s older.

Jen is interested in many things and can do a lot of stuff. She just has more challenges to deal with because she can't walk. Jen has spina bifida (pronounced: spy-nuh bih-fuh-duh) and uses a wheelchair to get around.

While some might not know how to pronounce it or even that it exists, spina bifida is one of the most common birth defects in children in the United States. Though the rates of spina bifida have declined in recent years, of the 4 million babies born each year in the U.S., 1,500 to 2,000 will be born with spina bifida. That's enough of a percentage to warrant a better grasp of what spina bifida is..

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 football 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 and 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.

The exact cause of spina bifida is unknown. Doctors believe that both genetic factors and environmental factors may influence  whether or not a child is born with spina bifida. Women who have had one child with spina bifida are more likely to have another child with spina bifida. Other risk factors include excessive use of alcohol, diabetes, obesity, folic acid deficiency, and exposure to certain chemicals.

All cases of spina bifida are not  the same. There are four different types spina bifida that can occur. These include:

  • Occult Spinal Dysraphism (OSD): A dimple in the lower back might be indicative of OSD, though plenty of babies have such dimples and don't have OSD. A doctor will need to run tests, but other indicators of OSD could be red marks, tufts of hair or small lumps. When a child has OSD, the spinal cord may not grow properly, resulting in serious problems as the child grows up.
  • Spina Bifida Occulta: This is commonly known as "hidden spina bifida" because a signifcant percentage of healthy people (roughly 15 percent) have it but do not know it. Because it isn't harmful and has no signs, spina bifida occulta is typically only revealed when people have an X-ray of their back.
  • Meningocele: Meningocele causes the spinal cord to come through the spine like a sac that is pushed out. While individuals with this condition may have minor disabilities, there is typically no nerve damage.
  • Myelomeningocele: The most severe form of spina bifida, myelomeningocele happens when parts of the spinal cord and nerves come through the open part of the spine, resulting in nerve damage and other disabilities. Of children with this condition, 70 to 90 percent also have excessive fluid on their brains because the spinal cord cannot drain the fluid effect

Jen 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 Jen was younger she walked with braces and crutches, but now she uses a wheelchair. Some people with spina bifida may have learning problems, but most have normal intelligence.

Or, in Jen’s case, above-average intelligence! Soon, Jen will take the SATs and start applying to colleges. Deb and Jen will always be friends. They hope to get into the same Pre-Law program and who knows, they might even join the same firm.

There’s no doubt, Jen may face challenges in life that are different than most of her friends’. But, nothing will stop her from reaching for the stars!