Too Young to Die

They are the "AIDS babies." Born before doctors learned how to prevent HIV transmission to newborns, hundreds of California kids are growing up under the burden of a deadly disease.

Even when he hung out on Haight Street, only a few bus stops away from his grandparents' corner-lot apartment near Golden Gate Park, he didn't go home.

"I didn't want to see them," he says. "Because, see, they knew, but they didn't tell me I had HIV right away. They just told me I was sick; I thought I had some blood problem. That really hurt, being lied to by my family. My grandmother didn't want to tell me because she thought I'd kill myself, which is really stupid. Like I'd ever do anything to hurt this pretty little body? I'm too selfish."

Finally, his grandmother persuaded him to return home when he was about 16, but he didn't kick his addiction to heroin for another year.

Dr. Diane Wara, of UC San Francisco's pediatric AIDS unit, says about 90 percent of her patients are orphans.
Anthony Pidgeon
Dr. Diane Wara, of UC San Francisco's pediatric AIDS unit, says about 90 percent of her patients are orphans.
Estrella Manio, a nurse practitioner at UCSF (now retired). "It doesn't get any easier to watch kids die," she says.
Anthony Pidgeon
Estrella Manio, a nurse practitioner at UCSF (now retired). "It doesn't get any easier to watch kids die," she says.

"I finally realized I was making my life shorter instead of longer, so I kind of mellowed out," he says. "Plus, I was ripping people off that I shouldn't have been, like my friends and my grandma. Heroin digs its claws in and totally changes you -- it's like being in love but times 1,000. You'd put your own mother on the street corner to get money for heroin."

Estrella Manio says she was thrilled when Metko started coming back to the hospital. Unfortunately, the two years without medicine drove Metko's T-cell count to dangerously low levels as HIV gobbled his white cells. A T-cell count below 200 results in a classification of AIDS; when Metko returned home with needle-tracked arms, his T-cell count was below 40.

"So even though he's healthy, he's still considered as having AIDS," says Manio, thumbing through his charts and shaking her black-haired head emphatically. "I told him he was really shortening his life by not taking his medicine, but he didn't listen. He said he didn't believe in it because he was so much healthier than his so-called friends who were taking the pills."

Now that Metko visits the hospital regularly and takes his 25 pills each day, his T-cell count has skyrocketed to 1,192. He is enrolled in classes and has only two more GED tests left to finish. He works for a needle exchange program and has a job with an advertising agency. He plans to apply to college next fall, get a job programming computers, keep producing and recording punk music with his band Jailbait, and marry when he's in his 30s, though he acknowledges he may not live that long.

Metko, the oldest patient in the UCSF pediatric AIDS unit, has already outlived many of his HIV-infected peers.

Since 1988 more than 355 children with AIDS have died in California. Because the human immune system is not fully developed in children, they are more likely to die from opportunistic infections or pneumonia, and AIDS progresses much more quickly. Many adult AIDS medications are inappropriate for children's immune systems due to kids' high rate of growth and development.

Metko's risk is especially high because his spleen was removed when he was a child, so his liver has to work even harder to protect him.

"We have a long list of those who have died already since I started here, and they always die in threes," Manio says, looking away at some orchids curving toward the window. She often cares for a pediatric patient for years, from the time he talks until he dies, and the children call her "Mama Estrella." It's not an easy job. "You never know when they're going to get an infection. And it doesn't get any easier to watch the kids die. I cry -- sometimes I cry more than the parents do." The lines around her dark eyes crinkle, but she doesn't smile. "I always go to their funerals."

Today doctors can almost eradicate mother-to-infant HIV transmission. Without any prevention methods, 15 to 30 percent of children born to infected mothers will contract HIV, depending on the amount of virus the mother is carrying at the time.

However, if an HIV-positive mother is treated with AZT during her pregnancy, has a Caesarean section delivery, and does not breast-feed, the baby has less than a 2 percent chance of infection.

Doctors believe babies contract HIV in the latest part of pregnancy or during birth from the amniotic fluid in their noses, eyes, and mouths as they pass through the birth canal. Therefore AZT may be effective even at the very end of pregnancy. Even a one-time dose of Nevirapine to both the mother during labor and the newborn after delivery -- costing about $4 total -- reduces the chances of transmission by about 50 percent.

"We haven't had babies born with HIV for two years now in our practice because of AZT," says Manio proudly. "We're going to be phased out eventually, I hope."

Until that time, Manio works with Dr. Diane Wara to care for the 40 infected UCSF pediatric HIV patients like Metko, Ricky, and Maria. Once the publicized "AIDS babies" of the 1980s, these patients -- and more than 1,500 other youths in California -- are America's forgotten children.

"Most of these kids live in the public housing projects," Wara says. "They don't have the money to buy clothes or school supplies."

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