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Born With H.I.V., Struggling With Teen-Age Lives




 

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. Ms. Grant angrily told Pierce 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 with a vengeance, it has extra potency in Pierce's case. He has H.I.V., 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 1990's, H.I.V.-infected children were considered lucky to make it to the first grade. But their life expectancy has been so extended that some children, including Pierce's older brother, Antonio, 18, are graduating from high school. AIDS deaths 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 Renell 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 to 5,000 of these children are getting old enough to have their own children.

Family Relives Its Time With Two Who Died

In the Bronx housing project near Yankee Stadium where Ms. 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 looked like a fetus, his big head flopping over a frail chest. Ms. Grant kept trying to lift his head. She donned a toy fireman's hat and comically wiggled, hoping to make him smile. The boy weakly tapped his chest to indicate that he could not breathe that well.

As the Grant children watched the old video, they were silent, but not visibly upset. They have seen it before. Damien, who weighed only 10 pounds, died two weeks after the video was taped. Plastic was stuffed into his burial suit to fill it out. 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 in AIDS history, though. Now, Antonio is eager to point himself out on the television screen. "That's me," he said, giggling at the shy young boy in a white shirt and green cardigan.

Ms. 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, Ms. Grant was among the caregivers who opened up their homes to babies like Antonio and Damien who were born to mothers who could not care for them because of AIDS, addiction to crack cocaine or other circumstances. Many of these infants, known as boarder babies, languished in hospitals with nowhere to go and became a symbol of an overwhelmed foster care system.

Antonio used to be gravely ill from AIDS. He had been infected with H.I.V. by a blood transfusion shortly after his birth in 1980 and spent most of the first four years of his life in a Brooklyn hospital crib. In 1985, when Ms. Grant's own children were teen-agers, she was so touched by a news report about boarder babies with AIDS that she took in Antonio, knowing little about him or the disease. About 40 percent of infected children are cared for by someone other than their biological parents.

"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 mid-1980's, when Antonio was in his worst condition, Ms. 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, both Damien and Rasheen were dead.

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

"They thought the child was going to die," said Jenny Grosz, co-director of the H.I.V. 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."

Once a Foster Child, Now a Harried Mother

In many ways, Ms. Grant, 49, a school crossing guard, is typical of people who accepted the infected children into their homes with a hope and a prayer. A short, scrappy woman, Ms. Grant is black, working class and the mother of four grown children in addition to her adopted children.

Ms. Grant also was a foster child herself. Her mother was hospitalized with a nervous breakdown when she was nearly 9; her father was an itinerant musician. She spent five years at a Westchester County children's home while her five younger siblings were sent to various other foster homes.

"I never got to see my sisters and brothers grow and have arguments and fights," Ms. Grant said. "I missed so much."

"This was my way of giving back," said Ms. Grant, who has, in addition to her three H.I.V.-infected sons, two other adopted children -- a girl, 11, and another son, 10 -- who are not infected.

Foster parents are currently paid $1,199 a month, triple the regular rate, to care for a child under 5 with H.I.V.; as an adoptive parent, Ms. Grant receives a bit less. But echoing the sentiment of many caregivers, she said the extra stipend was not her primary motivation.

Others who have adopted H.I.V.-infected children include people like the gay couple in Manhattan who got word that a child-care agency urgently sought homes for unwanted babies and was receptive to gay people. The couple, two white men, took in an African-American boy seven years ago when he was a month old, seeing it, in part, as a way to respond to friends who were dying of AIDS. They were told their son probably would not survive beyond his seventh birthday. But now he is thriving, they say, because of the new drugs.

Fewer infected babies are being born now because the drug AZT has been found to prevent maternal transmission. But because rapid test results were not available seven years, the gay couple did not know for 18 months that their little boy had H.I.V.

Echoing the angst of parents in their situation, the couple have yet to tell their son that he is H.I.V. positive. Their son has taken H.I.V. drugs his entire life but does not know why. One drug tastes like motor oil and bad scotch, according to one parent. "He will say 'Why am I taking this?' and I say, 'To keep you healthy.' That's enough now, but it's not going to be enough soon," one of the parents said.

And many families do not tell schools or neighbors about a child's H.I.V. status because they fear ostracism.

Ms. Grant, in fact, took the New York City Board of Education to court in 1990 when staff workers at her oldest son's Bronx elementary school gossipped about his condition. As part of the settlement, her son Antonio, gets a free education at a private school in Westchester County.

Like Ms. Grant's three adopted boys with H.I.V., the gay couple's son has taken special-education classes, as do an estimated 60 to 70 percent of infected children. But unlike Ms. Grant's children, the men's son recently was moved into mainstream general education classes after he received intensive speech and physical therapy. As a result, they say, their son no longer has the developmental delays associated with the virus.

Fighting the Urge To Skip Doses

Most children with H.I.V., though, do not have the luxury of their parents' undivided attention. They live with caregivers like Ms. Grant in sometimes chaotic homes.

The Grants live in Highbridge Gardens, a drab housing project surrounded by a chain link fence. Drug dealers loiter and undercover police officers cruise the neighborhood. Ms. Grant likes her children to be locked indoors by 8 P.M.

She is the only adult in the household. Her husband, who is diabetic, does not live with her. He stays with his invalid mother. It is an arrangement that perfectly suits Ms. Grant.

"My life is around kids," she said. "I don't have time for adults."

In Ms. Grant's apartment, bottles of H.I.V. medicine fill three shelves of a kitchen cabinet. More bottles of drugs clutter the kitchen table. Medicaid picks up the bills.

The other morning, Antonio, the 18-year-old, sauntered into the kitchen. At 5 feet tall, he has the small physique common among infected children. He made a beeline to the cabinet for his H.I.V. medication. This relieved his mother, who worries that her son skips so many doses that his health will fail.

Antonio wearies of taking nearly a dozen pills every day. But on this morning, he washed down three pills with Pepsi-Cola and dissolved other pills in water before gulping them down.

"Half of the time, I don't really take it that much," he said. "I'm sick of it. Sometimes, I just don't feel like it."

Ms. Grant's two other sons with H.I.V., Pierce and Martin, 12, also skip doses, known as drug holidays. But Antonio has the weakest immune system of the three. His doctors no longer prescribe him the powerful new AIDS drugs, protease inhibitors, because of his erratic adherence. They feared he might develop a drug-resistant virus. He now takes a simpler drug regimen.

His mother gives him ominous warnings: "You know if you don't take it, your behind is going to be dead."

Antonio is gambling with his life, says his pediatrician, Dr. Joanna Dobrosyzcki. "At this point, he is missing more than he is taking," she said. "He's really been under a lucky star for a long time."

For the moment, though, Antonio is not the child most worrying Ms. Grant. She is more concerned about Pierce.

Street-savvy and handsome, Pierce loped into the kitchen. Slightly built, but not as short as Antonio, Pierce was wearing a gold chain over a white T-shirt and sweat pants. His head was covered in a black-knit kerchief fashionable among his teen-age male friends. His mother said the head wrap made him look like a gang member. He rolled his eyes.

Pierce and his mother are at war over his independence. His doctor has become involved. So have the courts.

The 10th grader lately has been skipping school. He also was caught stealing camera film at the drugstore near his home. Some weekends, he has not come home.

In February, Ms. Grant hauled Pierce to Bronx Family Court in hope that a judge would talk some sense into him. He has to see a probation officer every other week.

"I don't want him to mess around on the street and end up in a box for something other than the virus," she said. "The virus ain't killing him. It's stupidity that's killing him."

Exasperated with the situation earlier this year, Pierce's pediatrician, Dr. Andrew Wiznia, made the boy and his mother sign a contract. Pierce said in the contract that he wants his mother to stop yelling at him. His mother said she wants to know his whereabouts.

Ms. Grant met the girl whom her son Pierce has been escorting to school. The girl has not been told that Pierce is H.I.V. positive. But Ms. Grant said she had a pleasant telephone conversation with the girl's mother. They both agreed that they did not mind the teen-agers spending time together as long as it was only friendship. Ms. Grant did not bring up her son's H.I.V. status.

"I don't think it's her business to know because they ain't doing anything," she said.

Letting Friends Know, Hesitantly

After school one day, Pierce was saying that he has told about 10 close friends that he is infected. Unlike his quiet older brother, Antonio, Pierce is loquacious. As Pierce confidently held forth on a plastic-wrapped couch, Antonio edged closer to listen.

"Usually I do it like, 'What would you do if you have a friend who has H.I.V.?' " Pierce said. " 'Would you still be with them?' So I tell them and they say, 'I feel sorry for you,' and they ask me, 'How does it feel? Are you all right? Are you afraid of dying?' "

"Usually when I tell them, they don't care," he said, then added, "As long as they can't catch it."

Pierce said he lost his virginity at 12 and that he has had sex with 20 girls, none of whom he told that he was H.I.V. positive.

The teen-ager said he did not reveal his status because he fears rejection. And even though he said he uses condoms, he said he still gets a little nervous.

Ms. Grant said that Pierce exaggerated his sexual experiences and she said he has now told her that he had sex with only one girl. She said she had warned him that knowingly spreading the virus might carry a jail sentence.

Pierce's doctor was surprised to hear that his patient was having sex at all. "We talk about sex all the time and he looks at me as if it's a distant event," Dr. Wiznia said.

Pediatric programs are trying to cope as the infected children grow up. At St. Luke's-Roosevelt Hospital Center, the pediatric H.I.V. program now has a gynecologist on staff and a support group for teens.

"We're dealing with more teen-age issues than we used to," said Dr. Stephen Arpadi, the program's director. "In many respects, for all the problems, it's like answered prayers. Many of us are surprised to see the way things have unfolded."



 


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Information in this article was accurate in April 18, 1999. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.