Shadow of AIDS becomes less dark for infected kids

October 13, 2002|By MICHAEL OLESKER

THE LAST PLACE I saw Vicki Tepper was that rowhouse off Loch Raven Boulevard. While men from the March Funeral Home quietly removed mourners' chairs from the little living room, Tepper consoled the grandmother of an 11-year-old boy named John-John who had just died from the effects of AIDS.

Tepper went to a lot of funerals in those days. It was six years ago, but it feels longer. Tepper, 45, is director of the Pediatric AIDS program at the University of Maryland School of Medicine. She has 175 children, infants to 18-year-olds, under her treatment there.

"I used to go to funerals all the time," she said recently. "Children who were born infected, prenatally infected, and we'd make them as comfortable as we could for as long as we could. And then they would die. But it's changed now."

She smiled hopefully at the thought. Six years ago, she sat there with John-John's grandmother in a room where the symbols of life and death still struggled with each other. There were cards and balloons still taped to walls, celebrating the little boy's final birthday. But there were memories of John-John's mother, as well. She'd battled drugs for the last 13 years of her life, and prenatally passed on to her son the virus that leads to AIDS.

In that time -- a snapshot of time, but a lifetime in the world of scientific discoveries -- researchers estimated there were about 250 HIV-infected children in Baltimore under the age of 13. Their life spans were considered limited. Now, Tepper says, the life span of infected children is considered limitless.

"Today," Tepper says, "50 of our 175 patients are 13 and above. A dozen years ago, we didn't think they could stay alive that long. Now they're living pretty normal lives. Very few of them are at the hospital. They go to school. They have friends. To look at them, you wouldn't know."

Some of the change comes from medical cocktails, "highly active retro-viral therapies that we didn't have before," Tepper says. "Some children take eight pills three times a day. Some children don't know that they have the HIV virus. They think they have allergies, asthma, sickle cell anemia, blood diseases. The parents don't tell them, and the caregivers do what the family wants."

There are still social stigmas -- though Tepper says these, too, have changed over time.

"Sometimes the families don't tell the children, because they don't want the kids to be shunned. That's the goal of every family -- to protect their children. So it's a family secret -- and the kids know there are things you just don't talk about. They don't even ask. There's a psychological process. They're defending themselves from knowing about this situation."

Where it changes, Tepper says, is when the kids start having sex. "They're just being teen-agers. And that's when we force the issue. You have to tell the kids what they have. And the families think the kids are going to be devastated -- but they're not. Sometimes it's a relief to them to find out, because all they know is they've been going to doctors every few months and getting [injections], and they don't know why. Finally, they know.

"We tell them, `You might wonder why you've been coming here. You have a virus in your blood. It means you can get sick more easily than other kids.' Interestingly," Tepper says, "they don't ask where they got it -- which was their parents' biggest fear to begin with."[The parents] know they didn't do it on purpose. Many women didn't even know they had the virus. But they have such a sense of shame and guilt, and they know about victims who have been shunned. I'm still stunned by some people's lack of understanding. Hugging is safe, kissing is safe, having them to dinner is safe. I know of teachers who wash down desks with bleach after school, they still have such fears.

"And the families know about this. They care deeply about their children, and want them to have a good life and not be shunned. But when you tell the kids they've got the virus, they're all right. They ask, `Can I still go to parties on weekends?' Things like that. And they can. They can take it in stride. Right now, there's no reason to believe they can't lead full lives."

In 1990, Tepper says, one in four babies born to infected women were themselves infected. Today, at University Hospital, she says, the figure is 2 percent.

"Because the medications are better and the testing is better. If a woman comes in early for prenatal care, we can stop the infections of children."

Only a few years back, Tepper was a collector of children's books -- specifically of books aimed at children who were dying. The other morning, Tepper remembered some of the titles: Gentle Willow, The Fall of Freddie the Leaf.

"I don't have to buy so many books now," she says. "The story now is, these children are still alive. And the community needs to embrace them, so they feel safe to tell people, and they can become adults in a world that accepts them."

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