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Evading the Virus  -  Fertility, Technology and HIV Evading the Virus  -  Fertility, Technology and HIV
An HIV Family Conceiving Ryan Family Activist Finding a Mom How It Works
Tracey Dannemiller has been HIV positive since 1985, but has hardly ever been sick. Her 9-year-old daughter Lesley was born with the virus.
An HIV Family
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im Dannemiller moved to Florida to die. It was 1995, he'd lost his wife to AIDS back in Maine, and the disease was pounding his own body so hard he just soaked himself with pain medications and waited for the end. Three years later, Tim was the father of a baby boy and was a new step-dad to four other kids. Tim says it just proves that he's one of many who are no longer dying of AIDS, but living with HIV.

Tracey Dannemiller, Tim's new wife, lost her first husband to AIDS and is herself HIV positive. Tracey has a 10-year-old daughter with HIV. While other couples in the Dannemiller's position might retreat from bringing more children into their world, this couple insists that living with HIV living a good life - means making babies together. It's a way of fighting HIV.

"We try to keep upbeat and live a normal life," Tracey says. "Dealing with this disease really makes you stop and appreciate life."

Lesley waits while her mother talks to the doctor. Tracey keeps close track of Lesley's health routine.

Tim is a carpenter and was diagnosed with HIV in 1984. He got the disease by sharing needles with other drug users, then spent the next decade fighting his illness like a swimmer struggling against a rip tide. Dying seemed inevitable, until new HIV treatments got deployed in the 1990s.

"If you'd approached me five years ago on the subject of people with HIV having children, I'd have told you it shouldn't happen," Tim says. "Medicine is so improved now that I've gone from being close to death and very sick to undetectable levels of virus in my system. I'm able to work and function normally. And that's something I couldn't do five years ago."

Tim is Tracey's third husband. She has four children of her own from two previous marriages, ages 6 to 15. Tracey's first husband died of AIDS in 1985. She divorced her second husband to marry Tim in 1997. They soon conceived a child.

Having fun at Family Day at Lesley's school.
Tim explains that, at age 40 and after several excursions towards the fringe of death, he began thinking about a legacy. "I had no one to carry on my name," Tim says, as his baby boy fusses on Tracey's lap. "Actually, I thought we were going to have a girl. But we got Timothy instead. He's my first-born son. He carries my whole name, Timothy Harold Dannemiller the second."

What Timothy Harold Dannemiller the second does not carry is HIV.

"When Timothy was born on Christmas day I knew that he'd be fine. I think that was just God's way of letting us know that we were doing the right thing, following the right paths, and it was just a little bonus for us to have Timothy on His day," Tim says.

Reducing the Risk

Tracey and Tim conceived their son the conventional way: through unprotected sex. But they also consulted closely with their doctors and with HIV experts at the National Institutes of Health (NIH) in Bethesda, MD. The Dannemillers were anxious to decrease the risk of infecting their baby. Tim took potent anti-AIDS drugs to lower his viral count at the time of conception.

Tracey was also on anti-AIDS medication at conception, and she got fed an intravenous stream of the AIDS-suppression drug AZT when she delivered Timothy . The baby got AZT for his first six weeks of life.

Tracey was not always this careful nor were such procedures available for some of her earlier pregnancies. Though they knew she was HIV positive, Tracey and her second husband (who was HIV negative) had three children without any special precautions. Studies show the risk of an HIV-infected mother passing the virus to her baby is about 25 percent. Statistics caught up with them.

Lesley

Lesley takes her medications with meals or a snack because they taste nasty.
At the dining table, a freckled girl of 9 holds a cherry Popsicle in one hand and a plastic cup of powerful anti-viral medicine in the other. She gamely draws a breath. "Ready?" Tracey asks her in an encouraging voice. "Down the hatch!"

Lesley gulps the liquid and then jams the Popsicle in her mouth. After a grimace she says with authority: "Believe me, you wouldn't want to take this stuff. Tastes nasty." Like her mom and step-dad, Lesley takes AIDS suppression drugs twice each day. She's the only girl in the family, so she gets her own room. That's where she tacks up pictures of the camps she goes to for chronically ill children. The local school authorities first balked at accepting the HIV-positive girl into classrooms with other kids, but later relented. Lesley says her HIV was no big deal to the other kids in fourth grade.

"They said I was lucky because I get to go to camp and stuff," Leslie explained. "They just want to be friends with me."

Lesley was the first HIV-infected child in the US to be selected for a federal study of the anti-AIDS drug Immunogen.

Tracey encourages Lesley to stay so positive about HIV. A healthy attitude, Tracey believes, is powerful medicine. And like many others who have survived so long with HIV, Tim and Tracey have outlived enough grim predictions from medical experts that they increasingly put faith in their own judgement - and in God - to sort things out. As Tim says, everything happens for a reason, even if a child of theirs is born with HIV. "There was always that little worry in the back of our minds. We finally came to the conclusion that, if the baby has HIV, who better to take care of it than us?" Tim says.

If Tracey and Tim seem alarmingly nonchalant about their decision to get pregnant, they say it's important to know how carefully they planned and researched. When they consulted the experts at NIH, they got blunt warnings about the hardships facing children who lose both parents. They also learned about all the available medical precautions to prevent HIV transmission, like taking AZT. Tim says that, in a way, having children is a chance to cheat the disease.

"I don't think because we have HIV we should not be allowed to have children. Especially if we can have a normal child. A lot of that happens nowadays," Tim says.

Risks and Realities

A baby born with HIV may fare much worse than its parents. AIDS researcher Lauren Wood of the NIH cautions that a child who is born with the virus, in spite of medical safeguards like AZT, may be sicker than the mother. Anti-viral drugs may not work as well for the baby.

Tracey attends each game and rushes to Lesley's side if there is a problem. Here, Lesley collapsed, complaining of stomach cramps.

"We clearly know that the virus, because it is so copious in terms of reproducing itself, it is able to mutate rapidly," Wood says. "The concern is that, if somehow the virus manages to be transmitted to the child despite the potent drug cocktail regimen, maybe the child will be born with a virus that is resistant to the drugs the mother was on."

Another issue, Wood says, is growing evidence that these new AIDS-suppression drugs, which looked so promising at first, may not be effective for as long as scientists first hoped. "While drugs do work for a period of time, that's just it - they work for a period of time. The duration varies from individual to individual. And it's that level of not being able to predict that has health-care providers voicing real concerns about people electively trying to get pregnant," Wood says.

Doctors who deal with HIV are divided over helping accommodate these couples. Some who work with HIV infected babies say it's unfair to the child to risk infecting it with such a dread disease. Meanwhile, some doctors and clinics treating HIV positive adults point out that, with proper treatment, the risks are quite low compared to other possible birth defects, and that people with HIV have a right to bear children.

Lesley's ninth birthday party.

The Dannemillers exercised that right again last month. The couple had their second child in August, daughter Taylor Alexis. This was an unplanned pregnancy, but to Tim and Tracey not an unwelcome one. Once again, they followed the latest medical advice on ways to avoid infecting the baby. In addition to using AZT, Tracey gave birth by cesarean. Research suggests a surgical birth further lowers the danger of HIV infection for the baby.

Taylor will be tested for HIV this week. But the Dannemillers won't find out the results until their October visit to the pediatrician. The doctor's office is an hour away in Tampa, and the nurses won't give HIV test results over the phone. So, Tracey says mildly, they'll just wait to find out. Tracey says that if Taylor is infected, knowing it sooner won't change anything because HIV is a disease you live with, not die from.


Photos on this page by Cindy Carp