How Could This Happen?
updated 11/23/1992 AT 01:00 AM EST
•originally published 11/23/1992 AT 01:00 AM EST
Whitney, 10, has AIDS; she is one of approximately 2,000 children in the U.S. who currently have the disease. But her tragedy is different from many of the others: Along with about 85 other AIDS children, she is classified NIR—no identified risk. In short, doctors have no idea how Whitney Williams contracted the killer.
It was last March 13 when Whitney's parents, Bruce Williams, 40, an insurance salesman, and his wife, Anita, 30, a certified nurse's aide, were told of their daughter's diagnosis. Understandably, they were stunned. Neither of them is infected with the AIDS virus, and Whitney had never received a blood transfusion. She didn't fall into the risk categories of drug use or sexual activity, and therapists and physicians found no indication of previous sexual abuse. Of the five Williams children—Whitney, Bret, 8, Becky, 7, Bart, 6, and Brad, 3—she had always been the healthiest. "It's so frustrating. I'm losing my daughter, and I don't know why," says Bruce. "You'd like to punch somebody, but you don't know who to punch."
Kent Taylor, spokesman for the Centers for Disease Control and Prevention in Atlanta sympathizes with families like the Williamses. However, he points out, "there will always be a certain number of NIR cases in which the source of infection can't be determined without further investigation."
In hindsight the Williamses now wonder whether the case of common childhood pneumonia Whitney came down with in November 1990 was the first sign of AIDS. The following May, Whitney cut her leg. When the wound became infected, Anita look Whitney to Lutheran General Hospital in suburban Chicago, where doctors gave her three days of intravenous antibiotics. In September she began running a low-grade fever and complaining of tiredness. "The doctors told us her immune system was still low from the leg infection and that she would be fine," says Anita.
But as autumn passed, Whitney grew sicker. She developed night sweats and chest pains, and her face broke out in a rash. "I kept telling the doctors that something was wrong, but they never charted it," says Anita. "From reports I'd seen on TV, I even began to wonder whether Whitney might have gotten AIDS from one of her stays in the hospital." Says Bruce: "I accused Anita of overreacting. I was wrong."
A few weeks after Christmas, Whitney woke with a sore throat. Despite a negative test for strep and assurances from doctors that Whitney was fine, the pain grew worse. When she couldn't even swallow liquids, her parents rushed her back to the hospital's pediatric clinic. Doctors diagnosed thrush, a yeast infection that caused ulcers in her mouth, throat and esophagus. Thrush, they later told Bruce and Anita, is an indicator for AIDS.
Blood tests last March confirmed the family's worst fears. "I was in my hospital room coloring when my mom walked in crying," remembers Whitney. "I asked what was wrong, and she told me I had HIV. I started screaming. I knew what it was because we had learned about it in school. Mama held me and hugged me. I asked her if I was going to die. She said, 'We're going to lake as good care of you as we can.' "
The following day's report was even more frightening: Whitney already had full-blown AIDS. Though doctors were bewildered over how Whitney contracted it, her pediatric immunologist now thinks she has been carrying the virus for years. The Cook County Department of Public Health has launched an investigation into her case. Dr. Stephanie Smith, director of communicable disease control at Cook County, says, "The causes could possibly include a sexual transmission no one is aware of or a past health procedure that involved blood-to-blood transmission."
The Williamses' AIDS nightmare was not the family's only medical crisis. In October 1991 the couple were rocked by the news that their couple's eldest son, Bret, had cystic fibrosis. While the family's medical costs skyrocketed, Bruce's commissions from selling insurance were plummeting due to the recession. To help out, Anita returned to work as a nurse's aide three days a week. But Whitney's and Bret's health problems often force her to miss work and lose pay. "I grew up believing in the American dream," says Bruce wearily. "Now I have a child dying, I'm losing my house, and I'm facing financial ruin. Normally I'm a problem solver, but I have no control over this."
In the face of seemingly insurmountable odds, it is Whitney's fighting spirit that keeps the family going. She refuses to let anyone cry in front of her, and she dons surgical gloves if she puts a Band-Aid on one of her siblings. Last August, the Make-a-Wish Foundation treated the family to a trip to Disney World. In September, friends of Bruce's parents bought Whitney the canopy bed she had dreamed of.
Though Whitney's school has been supportive, she has had to deal with some ugly reactions. When she returned to Parkview after the diagnosis, several students taunted her. For a time, a friend's father refused to let his daughter play with Whitney. Still she tries to put people at ease. She carries a small flowered purse containing protective toilet seat covers, surgical gloves and Band-Aids. She drinks from a thermos she keeps with her. "I don't want anyone to be scared of me," she says. "I try to ignore being sick."
Recently that has become harder. Last August she began having trouble breathing; lately she has been plagued by stabbing pains in her arms, legs and chest. In September her headaches became so severe that she was hospitalized and tested for meningitis. (The test was negative.) Earlier this month she was rushed to the hospital again with recurring ulcers and blurred vision. "I was holding her the other night," says Anita. "She was crying, 'Am I going to die tonight? Is this what it feels like to die?' I told her, 'No, honey, when you die there is no pain. You're not going to die until God is ready to take you.' "
CIVIA TAMARKIN in Chicago