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Growing up HIV positive

/ Source: The Associated Press

Known as AIDS babies, they are children born HIV-positive who contracted the virus from their mothers. No one expected them to live very long in the early days of the epidemic. But today, many are thriving teens, and facing a new set of challenges. This is the story of one of them, found with the help of her social worker and doctors at Children’s Memorial Hospital in Chicago — and with the understanding that she, her family members and friends would not be identified.

IF EVER THERE was a time to tell her big secret, this was it, the seventh-grader thought to herself.

She and a few friends — in pajamas at a sleep-over birthday party — had sequestered themselves in a storage closet under a basement stairwell. They sat in a circle, some on the floor, some on boxes, 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’d kept quiet for so many years took a deep breath and blurted a few quick words.

“I have something to say,” she said. “I’m HIV-positive.”

Breaking the silence

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.” She was the group’s prolific short-story writer who also liked to escape for hours in a Harry Potter book or science-fiction story. She was the one with a reputation for embarrassing her friends by wearing goofy clothes in public or singing at the top of her lungs as they walked down the sidewalk.

Now her friends knew something more: She was born an “AIDS baby” — a term only vaguely familiar to most people her age, since they were little kids when most HIV-positive children were born in this country.

Early on, the diagnosis was a death sentence, with few children 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.

Some have persevered despite losing a parent, even two. Some are incredibly healthy, while others struggle to stay well. And many survivors are now teenagers, only beginning to understand, let alone share, the secret that they and their families have guarded so carefully for so long.

‘Coiming out' to peers

The fact that they are reaching adolescence — a confusing and sometimes anxious time for anyone — only makes “coming out” to friends and people they’re dating that much more difficult.

“It is a complicated, sophisticated and terrifying task that they should not be expected to master alone,” says 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 freshman in high school, she is glad she told those few friends, who seem to have taken the news in stride.

That includes her best friend, who now declares: “HIV or no HIV, I’d be her friend no matter what.”

Others have responded similarly — much to the HIV-positive teen’s relief.

“I was a teensy bit worried about how they would react. But it all turned out OK,” she says with a nonchalance that belies the magnitude of her revelation — and the steps she sometimes still takes to hide her secret.

This is a girl who stopped taking her medication during the two weeks she was at camp this summer so her counselors wouldn’t ask questions.

To protect their privacy, and to avoid hassles and discrimination, she and her parents also have chosen not to share her condition with the principals and teachers at her schools. They are under no obligation to do so. According to legal experts, Illinois law requires that public health officials — not the family — inform her school, and then only if she develops full-blown AIDS.

At least for now, the teen also has not told her boyfriend, a longtime friend she’s been dating for a few months.

“When I do tell him, I want him to know that he’s special for having known it,” she says. “But I’m freaked out that if I tell him, every time we make out, he’s going to think, ’Oh my God.”’

‘She had no choice'

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 and did a spinal tap and biopsy of one of her lymph nodes, but found nothing. Finally, as a last resort, they checked for HIV in the fall of 1990, sometime after her first birthday.

The test came back positive — shocking her parents, both young professionals who didn’t 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 says, sitting on a couch with her daughter in their apartment living room. She rubs her daughter’s forehead as tears well up in her own eyes.

“I feel bad that I gave her this like I gave her brown eyes and pug nose.”

Her daughter is silent at the time, but later says she wishes her mom didn’t feel guilty.

“I’m not angry about it because she didn’t know,” she says. “I don’t blame her. But I’m not sure she believes that.”

‘How could this happen?’

Her father, now divorced from her mother, tells the story from his perspective as he dines at a Chicago restaurant with his daughter during one of their weekly outings.

He remembers that horrible day, too — and having to step out of the doctor’s office to be alone for a few moments, after hearing his daughter’s test results.

“How could this happen?” he asked himself as he paced the hallway for several minutes. “For a little kid to have it, it didn’t even register.”

Their doctors — still struggling with how best to deal with and treat AIDS babies — suggested the girl’s parents take extra precautions. Her father remembers being told to wear a dressing gown and gloves to change his daughter’s diaper.

“I didn’t do it. I said, ’If I’m going to get this from my daughter, so be it,”’ says the father, who is not HIV-positive.

Doctors told them their daughter would probably not live past age 4. But her mother wouldn’t believe it.

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

Her father wasn’t always so sure.

He remembers taking his daughter to holiday parties, co-sponsored by Children’s Memorial and the Make-A-Wish Foundation, for HIV-positive kids and their families. They ate turkey and mashed potatoes, and the children got gifts from Santa.

“One party, a kid would be there. The next party, the kid would be gone,” he says.

There were other scary reminders, including the time their daughter, then a preschooler, got a case of pneumonia that hung on for weeks. She still remembers walking around with an IV filled with antibiotics that finally helped her get well.

Medications are a way of life

For her, taking medicine of one sort or another has been a way of life. “For a long time, I thought all kids took medicine like I did,” she says.

It started with the drug AZT in liquid form, mixed with apple juice in her bottle. The drug was still only in trial stage for pediatric patients, her mother says. “But it was the only option.”

Since she’s been taking this latest round of medication over the last five years, the virus has been undetectable in her blood (though that doesn’t mean it’s not there).

Tests also indicate that her immune system is very strong.

“It’s like I’m normal and I’m not sick,” she says. “But I am.”

Because she appears so healthy, the friends she told two years ago don’t always remember.

She frowns but says little when they complain about getting blood drawn at the doctor’s office — something she must have done several times each year. And then there are the questions: “How far have you gone with your boyfriend?” they ask, not thinking about how physical intimacy is an even more complicated matter for her.

“Most of the time I feel like my friends should forget about it,” she says. “But then, sometimes I wish they’d remember.”

‘HIV was definitely an issue'

For years, even she didn’t 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, when their daughter was 5.

“Was HIV the reason? No. Was it a factor? Absolutely,” her mother says of her eventual divorce from her husband. “I don’t think he thought he could handle watching his wife and daughter die.”

Eventually, her father 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,” says 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? Why was her laundry washed separately?

When she had cold sores, should she really not kiss her father, as her stepmother suggested?

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 remembers saying. “I always said it in terms of ’we’ because it made it seem less scary.”

Her daughter doesn’t remember the conversation. (She says she doesn’t recall much of her childhood “because it was hard, mainly.”)

“I don’t think it came as a shock to me,” she says. “I knew there was something. But to me, it’s just like — one day, I knew.”

Basic ground rules

She and her mom went through some ground rules. “If you are bleeding, make sure whoever helps you is wearing gloves,” her mom told her. “But you don’t have to worry about kissing your father or hugging your friends.”

“Frankly, her initial openness freaked me out. But in many ways, she’s been a bit of a role model for me,” says her mom, who — at age 48 — has also been able to keep the HIV in check, and has since told a few co-workers about her condition.

By age 10, the girl was writing letters to AIDS organizations offering some of her allowance as a donation.

But as adolescence approached, more of the harsh realities of being HIV-positive became apparent. She was mortified when her doctor insisted on having a birds-and-bees discussion after her first junior high “makeout session” with a boy.

That same year, she started to hear comments at school, not aimed at her but still annoying, nonetheless.

“Oooooh, you have AIDS,” she recalls one student saying in the hallway to taunt another.

Then, a social studies teacher asked the class to comment on a news story related to AIDS. The article told how parents in another state complained after they learned an HIV-positive student was attending their children’s school.

Asked if the boy should be able to go to the school, more than half of the students raised their hands to vote “no.”

It was the first time the HIV-positive teen was unable to hold her anger in check. She remembers storming around the room as she tried to persuade the other students that they were wrong.

“Why are you so mad?” one student asked. But she couldn’t bring herself to fully explain.

‘I'm not in control of my life'

Eventually, she learned that some of her peers have been spreading her secret anyway. That became apparent this past summer when a boy she’d met at camp called her at home 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.

She worries that people who don’t know her well won’t understand how she contracted the virus. She fears they’ll call her a “whore.”

And what if one of them told her boyfriend?

That’s something she wants to do in her own time, if they stay together — and especially if they ever decided to have sex, something she’s not considering at this stage in her life.

“I’ve learned from my mother’s mistakes,” she says.

Her parents say that if they could save her from having to some day tell a boyfriend she is HIV-positive, they would. They pray for a cure and, in the meantime, worry about the toll that their daughter’s condition has already taken on her.

“I don’t want this to define her life,” her mother says, almost wistfully. But HIV hasn’t been easy to ignore.

‘Typical teenage stuff'

Last year, doctors insisted the teen 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. And, as her mother puts it, her daughter “shut down” for a time and refused to talk to her.

“You’re going down a black hole, becoming a beast,” the teen remembers her mom yelling at the time. “I don’t recognize you anymore.”

By her own choice, she continued to see the social worker and meets weekly with her even now. They talk about everything from dating and school to her frustrations with her parents and stepmom.

She still sometimes gets edgy when her mom asks a lot of questions. But these days, they both say any squabbles are “typical teenage stuff.”

“Being a teenager, it’s what all my friends say,” the teen says. “We all say our parents are annoying.

“There are times I say I hate my parents,” she adds. “But after that, I say I have the best parents in the world.”

Now she’s focused on building a life at her new high school.

Already carrying a full load of college prep classes, she’s in the choir and made the debate team. She also wants to run track and plans to start a literary magazine.

It’s odd now, she says, to think that her doctors thought she was going to die so long ago.

“Here I am thinking about prom and college and how I want to live in Paris for a year,” she says. “It’s a given that I’ll be here for that — at least that’s how it seems it should be.”

Doctors have told her that it will be possible for her to have a family one day. She’s also been told that her life may be shorter than some, though no one really knows for sure.

Dr. Ram Yogev, who oversees the pediatric and maternal HIV unit at Children’s Memorial — and has treated her since she was an infant — looks at it this way: “I’m an eternal optimist. As far as I’m concerned, HIV is a chronic disease like diabetes.”

That statement would make the teen’s mother smile, since Yogev was among those who initially thought her daughter would live only to age 4.

As her parents do, the teen speculates about a cure — “maybe by the time I’m 25,” she says. “Who knows.”

She also can envision the day when she won’t care if anyone knows she’s HIV-positive: “I’d like people to say, ’Look at her — she’s a good writer and good student and she’s HIV-positive. I guess it’s not that bad.”’