The Test That Saved My Baby's Life

Screening every newborn for rare genetic diseases can seem unnecessary and invasive -- unless your child is the one who is diagnosed.

One little prick in an infant's heel can give his doctor crucial health information.

When it comes to making choices about her family's health, Korissa Olson admits that she tends to be cautious. She prefers to buy organic food and to use natural remedies whenever possible. "I'm always aware of what we are putting in our body," says the professional singer from Brooklyn Park, Minnesota. So when she was about to give birth to her second child in April 2008, she and her photographer husband, Darren, decided to skip the heel-prick blood test in the hospital that would screen their newborn for extremely rare illnesses. "I figured that I'd had a perfectly normal pregnancy, and we had no known diseases in either of our families."

What's more, someone at church had given her a pamphlet that had soured her on the idea of newborn screening. Distributed by a grassroots organization that she never knew the name of, the flier warned that the state's screening for diseases was an invasion of personal privacy. It said that spots of babies' blood are stored on paper cards by the Department of Health -- and claimed that the state might use a baby's DNA for research or even maintain the genetic information so that it could become the basis for future discrimination. "My ears prick up when I hear things like that," Olson says.

But she is still stunned by what happened after her son Everett was born. At the last minute, she changed her mind and decided to let him be screened. Everett was found to have a potentially deadly genetic disorder -- a 1 in 60,000 fluke -- that has no obvious symptoms at birth. Thanks to a surprisingly simple treatment, he is now a healthy toddler. "I have no doubt that the test saved his life," says Olson.

Every year, state health departments screen the blood of more than 4 million newborns for an array of serious diseases. Although the heel-stick test is routinely given to all babies in the hospital -- and a few drops of their blood are placed on a paper card and later analyzed -- parents in every state except Nebraska can request that their baby not be screened. Now, activist groups around the country are frightening expectant parents by waving the red flag about privacy issues. "These groups are not large in number, but they seem to be increasingly vocal and fairly well organized," says Mark McCann, director of the newborn screening program in Minnesota. With fliers, petitions, and hearings before state legislatures, they've already posed a threat to what's arguably been one of the most successful public-health programs in recent history.

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