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Group strives for prevention, help for those with condition By Laura Ungar Seven months into her pregnancy, Donna Bailey had an ultrasound revealing something very wrong -- water on her baby's brain, indicating a birth defect known as Spina Bifida. When Travis was born, Bailey recalls the heartbreaking words of one doctor: "He's a floppy baby. He'll never do anything." He certainly wouldn't talk, the doctors said; his vocal cords were paralyzed. But 35 surgeries later, Travis is a talkative 11-year-old with bright blue eyes who loves video games and remote-control cars. He talks by sheer will -- pushing air out as hard as he can so that his vocal cords vibrate despite the paralysis. "My legs don't work. I've got a wheelchair. I pop wheelies and stuff," said Travis, an incoming fifth-grader at Bates Elementary School in Louisville, giving a quick demonstration. Travis' progress -- his very survival -- shows how the outlook has changed significantly for the 70,000 to 130,000 Americans with Spina Bifida, the subject of the 34th annual conference of the Washington, D.C.-based Spina Bifida Association, which began yesterday at the Kentucky International Convention Center. Before the 1960s, most people with the condition died in infancy. Today, medical advances have allowed many to live a normal lifespan. Dr. Timothy Brei, medical director for the association, said Spina Bifida causes many problems, including water on the brain, or hydrocephalus, bladder and bowel problems, and paralysis. Major treatments include shunts that drain extra fluid from the brain into the abdominal cavity, and surgeries. "We do not have a cure for Spina Bifida," said Brei, a 51-year-old Indiana man with the condition. "Every treatment we do is a management treatment." Scientists believe that genetic and environmental factors combine to cause Spina Bifida. Maternal obesity and gestational diabetes are believed to be factors, but one of the most important is folic acid deficiency. Studies show that the risk of Spinal Bifida can be greatly reduced by taking folic acid daily before pregnancy, and the association advises women to take a multivitamin every day during childbearing years. Brei and Marlene Lutkenhoff, a nurse at Children's Hospital of Cincinnati, said one reason Hispanic babies are at greater risk might be because taking multivitamins is not necessarily part of their culture. Also, many eat a diet rich in corn instead of breads and cereals fortified with folic acid. Association leaders said they are trying to get the message out to Hispanic Americans through Spanish-language educational materials and outreach. "Every day, we're trying to focus our programs toward that community," said Cindy Brownstein, chief executive officer of the association. The group also is continuing its efforts to help all people living with the condition. Its conference, which runs through Wednesday and is drawing more than 900 people, features medical sessions for families and information on such issues as parenting and adult health. It also features a camp for children and teens with horseback riding and wheelchair sports. Association leaders said that dealing with Spina Bifida presents many challenges, including financial ones; the average lifetime cost ranges from more than $500,000 to $1 million. But parents of children with Spina Bifida say the joy their children bring far outweighs any difficulties. George Smith of Louisville said of his 9-year-old son, Nathan: "Not only has he survived, but he's thrived. He's been a blessing to everybody." Donna Bailey said that when Travis was born, she and her husband wondered what the future would hold. "What we got was this awesome child," she said. "He's done so much more than we ever imagined." For more information
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