Associated Press - Sunday, November 23, 2003
Martha Irvine

If ever there was a time to tell her big secret, this was it, the seventh-grader thought. She and a few friends at a sleep-over birthday party had sequestered themselves in a storage closet under a basement stairwell. They sat in a circle and talked for hours, promising, "Whatever we say here stays here."

One girl shared her fear that her parents were on the verge of divorce. Another said she felt pressure to live up to her brother's example.

There was silence for a moment. Then the girl who had kept quiet for so many years took a deep breath and blurted a few quick words: "I have something to say. I'm HIV-positive."

Until then, her friends had simply known her as their fun-loving buddy, the honors student, the girl with sarcastic wit who was as likely to use a big word they didn't understand as to address her friends as "dude." Now her friends knew something more: She was born an "AIDS baby," a term only vaguely familiar to most people her age.

Early on, the diagnosis was a death sentence, with few living long enough to attend kindergarten. Eventually, however, new AIDS drugs emerged and the prognosis brightened for a population of young survivors who have quietly but tenaciously outlived life-expectancy predictions.

Many of those young people now are reaching adolescence, a confusing time for anyone, making "coming out" to friends and people they are dating that much more difficult.

"It is a complicated, sophisticated and terrifying task that they should not be expected to master alone," said Erin Leonard, a social worker who counsels HIV-positive teens at Chicago's Children's Memorial Hospital. Her clients include the teen who revealed her HIV status at that birthday party two years ago. The Associated Press reached the girl through her doctors and Leonard. The teen, her family and friends spoke on condition of anonymity.

Now 14 and a high school freshman, she is glad she told those few friends, who seem to have taken the news in stride.

"I was a teensy bit worried about how they would react, but it all turned out OK," she said with a nonchalance that belies the magnitude of her revelation.

When her mother got pregnant, she had no idea she had contracted the AIDS virus from a former boyfriend years earlier. So when her daughter was born in 1989 at a Chicago hospital, initially no one realized that the child was HIV-positive.

Doctors found the first sign of trouble, swollen glands, during one of the baby's first checkups. They tested for cancer and other ailments, but found nothing. Finally, as a last resort, they checked for HIV. The test came back positive -- shocking her parents, both young professionals who did not fit the high-risk profile of people whose children were born with the AIDS virus.

Her mother, who learned soon after that she also was HIV-positive, calls the day they found out "one of the most devastating" of her life.

"I got this because of choices I made. She had no choice," she said, sitting on a couch with her daughter in their apartment's living room.

Doctors told the couple their daughter would probably not live past age 4.

"As a mother, part of me refused to accept not the diagnosis, but the prognosis," she said. "You could call it denial. I would call it faith."

Her parents started giving their daughter the drug AZT in liquid form, mixed with apple juice in her bottle. Today, she takes two batches of seven pills each day. "For a long time, I thought all kids took medicine like I did," she said.

Since she has been taking this latest round of medication over the past five years, the virus has been undetectable in her blood. Tests also indicate her immune system is very strong.

"It's like I'm normal and I'm not sick," she said. "But I am."

For years, even she did not know she was HIV-positive, only that she and her mom both took medicine for some unspoken ailment.

"There's something wrong with our blood, and the medicine helps keep us from getting sick," her mother would tell her.

Still, while her parents wanted to shield their daughter from HIV as much as they could, the stress for them as a couple became too much.

They separated in 1995. Her father eventually started dating another woman and, in 1997, proposed marriage. A month before the wedding, he told her that his daughter was HIV-positive -- and immediately, things got difficult.

"I did my best not to treat her differently. But there were times when the HIV was definitely an issue," said her stepmother.

The girl was confused and upset that the rules were different at her father's new home. Why, she asked, was her stepmother insisting that she wrap her used Band-Aids in plastic and flush them down the toilet?

The girl's mother knew she had to explain. So she sat her 8-year-old down and, with the help of a nurse and a psychologist at Children's Memorial, broke the news.

"This is what we have, and you got it from me when you were born," her mother remembered saying. "I always said it in terms of 'we' because it made it seem less scary."

Recently, she learned that someone had spread her secret when a boy she met at camp called to ask if she was HIV-positive. She told him she was, then panicked.

"It makes me feel really angry -- like I'm not in control of my life," she said at the time.

Last year, doctors insisted she see Leonard, the social worker, after she vented some seething anger about her stepmom in an online journal. Her usually stellar grades at school also suffered.

Things are better now. By her own choice, she has continued to meet weekly with Leonard.

"Here I am thinking about prom and college and how I want to live in Paris for a year," she said. "It's a given that I'll be here for that -- at least that's how it seems it should be."

Doctors, who believe she will be able to have a family one day, are treating her condition as if it were a chronic illness, like diabetes.

It's enough to give the teen hope that they might some day find a cure -- "maybe by the time I'm 25," she said. "Who knows."

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