DISABILITIES

By Daniel J. Vance

 

  The memory remains fresh: a little girl asking if she could "catch" what my 7-year-old girl had—spina bifida.

  At first I was puzzled with the little girl's comments. Later I realized she was only asking what many grown-ups might have thought. After all, we all know too well the HIV virus can be "caught" under certain circumstances. Years ago tens of thousands of Americans "caught" polio. People catch flu, colds and infections—so why not spina bifida?

  Spina bifida isn't contagious. It's a birth defect like cleft palate or clubfoot—and as such can no more be "caught" than blond hair, blue eyes or freckles. The severity depends on the location of the bifida, or split, on the spinal column, and ranges from mild, as with rock singer John Cougar Mellencamp's, to highly disabling. My little girl is paralyzed from the knees down.

  The Spina Bifida Association of America (sbaa.org) claims spina bifida is "the most frequently occurring permanently disabling birth defect," affecting one in every 1,000 U.S. newborns.

  It occurs when a baby's spine doesn't close properly the first month of a pregnancy, which leaves the spine exposed, causing nerve damage and paralysis. In severe cases the spine protrudes out the back. Surgery to close the opening is performed to preserve existing nerves.

  To learn the latest in spina bifida research, I asked Mary E. Johnson, director of communications, of the Washington D.C.-based Spina Bifida Association of America. She said, "What we now know is that 70 percent of cases can be eliminated by taking daily 400 micrograms of folic acid prior to pregnancy. It's the amount in a multivitamin. If a woman takes folic acid, she's doing all she can. The other 30 percent of cases, which we're trying to address, is a huge mystery, but we do know genetics and the environment play a part."

  As for the environmental role, in 1996 the National Academy of Science determined an association existed between U.S. soldiers exposed to Agent Orange and spina bifida in their offspring. (Our military began spraying the defoliant Agent Orange in Vietnam in January 1962.) To remedy the situation, Congress authorized the Agent Orange Benefits Act, which provides lifetime benefits to offspring, including healthcare services, a monthly allowance, and VA vocational training and rehabilitation.

  To learn more, visit www.sbaa.org.

  [Contact Mr. Vance with questions and comments at www.danieljvance.com. Copyright 2003 by Daniel J. Vance.]