Families face extra challenges with HIV-positive teens

As children live longer, dating, sex conflicts arise

April 18, 1999|By NEW YORK TIMES NEWS SERVICE

NEW YORK -- Renell Grant learned something new about her adopted teen-age son the other day when she was summoned to his high school in the Bronx. He was seeing a girl.

Pierce, 15, was showing up a half-hour late for class every morning because he was squiring the 14-year-old girl from her home to school. Grant angrily told her son that he had better focus on his schoolwork, not on being a "lover boy." After some heated words, he promised his mother that he would not do it anymore.

While this was a typical squabble between a mother and a son who has hit his teen-age years, it has extra potency in Pierce's case. He has HIV, the virus that causes AIDS.

Pierce is part of a maturing, little-understood population of infected children who, because of medical advances, are living far longer than anyone expected, thriving into their teens and beyond.

As these children grow, the normally turbulent issues of youth -- like dating and independence -- are colliding with their chronic terminal illness in ways that their families never envisioned when the children were babies.

Until the early 1990s, children infected with human immunodeficiency virus were considered lucky to make it to first grade. But their life expectancy has been so extended that some children, including Pierce's brother, Antonio, 18, are graduating from high school.

Deaths from acquired immune deficiency syndrome dropped by 50 percent in children from 1996 to 1997, a reduction that federal health officials say is probably the result of combination drug therapies and medicines to treat opportunistic infections.

Now, instead of planning funerals, parents like Grant worry that their children's behavior could hurt them, and -- if unprotected sex is involved -- others.

Nationwide, there are an estimated 20,000 infected children and teen-agers, including those with full-blown AIDS, born to infected mothers, according to health officials. And the officials say that between 2,000 and 5,000 of these children are getting old enough to have their own children.

In the Bronx housing project near Yankee Stadium where Grant lives with her five adopted children, she was frying chicken wings for dinner on a recent Sunday when Antonio popped in an old family video.

Viewing the video has become a kind of ritual for visitors to this household where three of the five children are infected. An image appeared of another adopted brother, Damien, at age 5 in 1990, wasting away from AIDS.

Damien, weighing 10 pounds, died two weeks after the video was taped. Antonio, who has full-blown AIDS, used to sleep fully clothed because he was certain his dead brother was coming to get him.

That was years ago, though. Now, Antonio is eager to point himself out on the television screen.

Grant agreed to be interviewed only if her children's first names were not used. For this article, two are identified by their middle names and one by his birth father's surname.

In the early days of the AIDS epidemic, Grant was among the caregivers who opened their homes to babies like Antonio and Damien, born to mothers who could not care for them because of AIDS, addiction to crack cocaine or other circumstances.

"We were told that these kids might die at any time," she said, adding that she had been told to "be strong, give them a life and make them comfortable."

In the late 1980s, when Antonio was in his worst condition, Grant also took in Damien, then a 5-month-old boarder baby from the Bronx, and Rasheen, 4, from a foster parent too old to care for him. By the end of 1990, Damien and Rasheen were dead.

But with the advent of new antibiotics and other medicines in the next couple of years, Antonio's health began improving. Now parents like Grant face a whole new set of problems.

"They thought the child was going to die," said Jenny Grosz of the HIV team at the Children's Evaluation and Rehabilitation Center of the Albert Einstein College of Medicine in the Bronx. "There's an ambivalence that the kids are doing well. They have invested so much to try to keep the kids healthy, and now the kids are taking their fate into their own hands. They're making risky choices."

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