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.

The brown teddy bear on Metko Irson's bed stares mournfully with crooked eyes and no nose or mouth. It's a reminder of his mother, who died in a car accident when he was 6 years old, shortly after she gave him the bear. He used to cling to it while he slept, but he's not afraid in the dark anymore.

It's hard to be afraid of anything when you're HIV-positive.

Metko, age 19, didn't have sex without a condom. He didn't get HIV from using needles. He was simply born, rubbing HIV-infected amniotic fluid out of his eyes. He didn't find out until he was 13 years old.

"I hate pity," Metko says. "I mean, this is my life. If I can handle it, you should be able to."
Anthony Pidgeon
"I hate pity," Metko says. "I mean, this is my life. If I can handle it, you should be able to."
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.

"Children like Metko were born at a time when we didn't know how to prevent perinatal transmission," says AIDS pediatrician Dr. Diane Wara of UC San Francisco. (For reasons of confidentiality, the names of the children in this story -- Metko, Ricky, and Maria -- have been changed.) "There really wasn't much we could do, even if we knew."

Wara notes that most children born with HIV live with foster parents, since their natural parents usually die from AIDS by the time they are teenagers.

"I'd say with about 90 percent of our kids the natural parents are dead," says Estrella Manio, the clinical trials nurse practitioner at UCSF. Metko's father, divorced from his mother when Metko was a baby, died of AIDS-related pneumonia shortly after her death. "At least Metko is lucky, because it's his grandparents who take care of him."

Metko's grandmother, a bustling, white-haired, full-blooded Russian, rations Metko's cigarettes over the course of each day. He counts to see how many he has left before lighting up.

"To me, AIDS is mundane," he says, puffing out a cloud of smoke. It's his ninth cigarette today. His years on the street have carved dark circles under his penetrating eyes. His bushy, dark eyebrows and crooked smile dance across his pale white skin. He's 5-foot-3 and thin -- his mother's addiction to heroin and his premature birth stunted his growth, he says.

"It's not like some soap opera," he says bitterly without breaking eye contact. "If I have HIV, then I have HIV. All that means is that I'm probably going to die a little sooner than somebody else. I don't have mortality issues, not anymore at least. You just learn to live with it, like anybody with cancer, or only one leg. And I hate pity. It makes me feel awkward. I mean, this is my life. If I can handle it, you should be able to."

Metko's lack of fear is not unusual. Wara says children diagnosed with HIV/AIDS handle the news in one of two ways.

"Some of these kids really grow up fast and take responsibility for their disease," she says. "Others handle it just as you'd expect: They figure they're not going to live to be 40, so it doesn't matter what they do. They go out on the streets, do drugs, have sex, and they don't tell anyone they're HIV-positive."

Metko admits he snapped when he found out he had HIV.

"It was pretty awkward how they told me," he says, grimacing. "They brought in all the nurses that knew me, like Estrella, and the doctor, and they said, you know, "We have to tell you something.' I felt like it was entertainment. They all just sat around watching me. It was really embarrassing. So then I'm like, "OK.' It didn't hit me until a couple of months later."

That's when he got angry.

"I thought I only had about five more years left to live, so I should go out with a bang," he says, adjusting the black Raiders hat angled on his head. "I'd get drunk, come home late just to fuck with my grandparents, wouldn't go to school. Stopped believing in God, I was like, "Fuck God, why would God punish me, what have I done to anybody?' There was a lot of self-pity, like "I don't deserve this.'"

He has stepped into the rain outside Starbucks for another cigarette break and watches the passing cars spray sheets of water. Nearby, a mother shields her four huddling children from his drifting smoke. As soon as he notices her irritation, he winces and grinds his cigarette out on the ground, apologizing.

"My two New Year's resolutions -- to stop smoking and to read more." He shakes his head grimly. "But then, maybe I won't stop smoking -- I'm obviously not too worried about cancer."

Metko started smoking when he was 14, about the same time that he ran away and started squatting in abandoned houses with other homeless people. He hopped freight trains all over the country and Mexico, following punk rock bands and wearing the same clothes until they fell apart.

"I didn't like being dirty all the time or being strung out on heroin," he says, swirling the cinnamon on his latte contemplatively. "But it wasn't so bad. The worst thing that ever happened to me was I'd catch a cold, or I'd overdose and the other junkies would have to resuscitate me. We'd eat the leftover fries in thrown-away bags outside McDonald's."

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.

"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."

Manio says she often lectures off the clock, encouraging donations to the UCSF Quality of Life Fund to support children like Metko. Sometimes the money comes out of her own pocket.

"I don't give too much," she says. "I'm not rich. But I give a few dollars whenever I can. I mean, if you can make it better for them, then why not?"

Nearly two out of three women of childbearing age who participate in the California AIDS Drug Assistance Program have annual incomes of less than $7,500.

Shirley Bellano is one of those women. She slumps over her green vinyl tablecloth and stares at the blank wall next to her. She coughs frequently. The Samoan woman's dark hair shrouds the tired eyes within her gaunt, wrinkled face. The blinds are closed throughout the three-bedroom, one-bathroom rented apartment in South San Francisco. The upside-down skeleton of a broken bike lurks in the corner shadows. Outside, a siren wails.

Bellano, mother of four, sighs as she talks about her 10-year-old son Ricky, who was born with HIV. She left him at a neighbor's house so he wouldn't have to talk about his illness.

"He's so angry," she says, closing her eyes. "Once, at the hospital he said to me, "I hate you, because I wouldn't be sick if it weren't for you.' That really hurt, but I can't blame him. Sometimes he says, "I don't want to take the medicine, I just want to die.'"

Twice a day Ricky takes a liquid medicine and seven pills.

Bellano, 43, guesses she may have contracted HIV in 1985, possibly from sharing needles or from her bisexual partner. After she had her second baby and finished serving her jail time for heroin possession in 1986, she got a checkup for pneumonia.

"The doctor told me I was positive with HIV, but at that time I didn't know what that was," she mumbles. "I didn't get no counseling or nothing. I didn't know I could give it to anybody."

She married her husband, who contracted HIV from her and died of AIDS in 1998, and she gave birth to Ricky.

"He was so sickly and he had some kind of bleeding disorder, so we took him to the doctor," she says, her voice controlled. "After that he had to go to the hospital once a month until his immune system got stronger. And now he knows he'll die sooner if he doesn't take his medicines."

Bellano was already five months pregnant with Lucas when Ricky was diagnosed with HIV. Fortunately, she agreed to participate in a study on the effects of AZT on pregnancy, and Lucas was born HIV-negative.

Bellano says she has felt a lot of guilt while raising Ricky.

"It kills me, every day," she says. "I let him get away with so much growing up because I felt bad, but now he's using it to his advantage."

Bellano says her other children resented Ricky while growing up because he got all the attention.

"One of my daughters couldn't wait to get sick because she thought that's what it was all about."

Bellano developed AIDS in 1991.

"When you first hear, you're expecting to die any day. I was so depressed," she says. Now, however, she just feels fortunate that she has lived so long, especially since she doesn't take medicine.

"When I was faced with all those pills I had to take, I just couldn't do it," she says. "I forgot to take them a lot."

Bellano doesn't acknowledge that the pills could extend her life.

"If my time comes, it comes, with the medicine or without," she says. "I could take all the medicine in the world, but if I'm going to die, I'm going to die."

UCSF's Manio notes that mothers like Bellano cause her the most frustration.

"If they can't take care of themselves, then how are they going to take care of their kids?" the nurse asks, her voice grave and irritated. "For instance, one of our patients is dying, but whenever she gets the chance she does drugs. She has two kids, one is infected, and that child keeps saying she doesn't want to outlive her mom. So she refuses to take her meds, her viral load is sky high. What do you do with that?"

Bellano, who is now in drug rehabilitation, says she may start taking medicine soon if doctors find her a more realistic regimen. She feels guilty making her son take medicine even though she doesn't.

"The only reason I'm living now is my kids," she says. "It would be selfish to leave my kids to face the world alone."

Bellano, who got hooked on drugs immediately after finishing high school, doesn't have a job, but she takes a computer class on Saturdays hoping it will eventually lead to a part-time job. She receives state disability money and welfare for her children. Altogether, the four-person family lives on $1,700 a month, and the San Francisco AIDS Foundation pays 67 percent of the rent on the apartment. The family manages, she says.

"I chose to live the life that got me here, but kids who are born with HIV don't have a choice," she says, her face cracking. Her next words echo slowly. "Like my son ... like my son."

Metko's walls are covered with black-and-white fliers advertising punk rock bands. He has a Macintosh computer, a TV with Nintendo games scattered under it, and a high-quality stereo system. A red, white, and blue "election official" name tag stands out on his door. "Metko" is scrawled with determined pen, and under it is printed, "Hello. May I help you?" Metko has slashed out the word "help" and replaced it with "fuck." Godzilla models are frozen in the act of pouncing all over the room. A picture of his mother, blond and serious-looking, sits on one of his tables.

Pornography magazines -- the only things in his room that his grandmother doesn't move, he says -- leak from under his bed.

"My grandmother made it a rule that there's no sex in the house. But that's a rule that gets broken sometimes," he says, spreading his arms and smiling impishly.

Metko, who lost his virginity when he was 14, swears that he told each of his 15 or so lovers his HIV status and that he changes his condom every half-hour during prolonged sex to protect his partner. So far, he says, not one has changed her mind about him after hearing the news.

He looks down at his hands blankly. "I'm such a hopeless romantic," he says. "But God, I think I'd die if I couldn't have sex."

Metko says all his friends know he has AIDS and are very supportive, but his grandparents refuse to tell anyone.

"It's the "eww' factor, I guess," he says. "My grandmother's friends can't read or speak English. They're not the most informed."

In the silence, he listens to his grandparents fighting in the next room. Metko smiles.

"They've been yelling at each other every day for 40 years," he says. "Pure, unadulterated hatred -- it's beautiful."

He rummages in his room until he produces a small bag of marijuana. He empties a can of Coca-Cola and pokes holes in the top to make a temporary pipe.

"Our house always smelled like pot -- my mom used to grow it," he says nostalgically, breathing out marijuana smoke in small puffs. Because Metko's mother was addicted to heroin, she was likely part of the 53 percent of HIV-transmitting California mothers who contracted HIV from injection drug use or from heterosexual contact with an injection drug user. "I have no complaints. It wasn't her fault I got HIV. She didn't know when she had me."

Metko's surprising lack of bitterness demonstrates a personal strength that shouldn't be necessary. With the prevention methods available today, HIV testing of every woman could prevent the transmission of HIV to innocent newborns from ever happening again.

An HIV test costs $3 to $5, whereas the average lifetime charges for the care of a child born with HIV is estimated at $491,936.

According to the California Department of Health Services, approximately 6,530 HIV-infected women gave birth in the United States in 1993. An estimated 1,630 of their infants were HIV-infected. In 1995 an estimated 89 infants were born with HIV in California. Worldwide, more than 1,600 children are born with HIV every day.

More forgotten children.

California law since 1995 requires prenatal care providers to offer HIV counseling and testing to every pregnant woman during prenatal care.

California law also requires that a physician obtain a blood specimen from a pregnant woman before or at the time of delivery. Assemblyman Robert Pacheco (R-City of Industry) introduced a bill last year that would require doctors to test the blood specimen for the presence of antibodies to HIV. It was known as the "baby AIDS bill," but it was vetoed by Gov. Gray Davis in September 2000. New York and Connecticut are the only states that have mandatory testing.

Congress also recently considered a bill proposing mandatory testing for all mothers or newborns, but the bill only passed into law with a compromise: It provides financial incentives for states that test all newborns or all newborns born to a mother of unknown HIV status, or that demonstrate they are making significant progress in reducing perinatal transmission. The bill provides $4 million for the first year for activities of any kind related to the prevention of mother-to-child transmission.

The Elizabeth Glaser Pediatric AIDS Foundation in Santa Monica opposes mandatory testing of women, believing that it damages the cooperative relationship between a mother and a health care provider and makes at-risk women feel too threatened to seek prenatal care at all. Instead, the foundation supports universal, routine, voluntary testing of pregnant women.

"That's the basic standard of care every physician should provide, without a law making it mandatory," says a representative of the foundation.

The U.S. Public Health Service recommended universal counseling and voluntary HIV testing of all pregnant women in 1995. Since then, the combination of testing and drugs has created a true AIDS success story -- a 75 percent decline in pediatric AIDS cases in the last five years.

Despite the progress, however, children are still becoming infected: In 1999, the Centers for Disease Control estimated that 300 to 400 babies will be born with HIV infections each year in the United States.

The largest problem, of course, stems from women who receive no prenatal care. CDC data shows that 15 percent of HIV-infected women in the United States receive no prenatal care, compared to only 2 percent of women in the general American population.

Some women refuse testing because they believe they are at low risk, and some providers fail to offer testing because of perceived low risk. Some health care providers apparently believe they can assess at-risk women and are disinclined to offer all women the test, with its extensive and onerous pretest counseling.

"There are still a lot of doctors around the country who are afraid to break that barrier and test their patients for HIV because of the stigma," says Kelly O'Riley at the Glaser Foundation. "Doctors assume that if their patients are upper middle class, there's no need to test, but of course that's not true."

A total of 5,434 AIDS cases among women of childbearing age were diagnosed from 1988 through 1997 in California, and San Francisco County has the highest percentage of HIV/AIDS patients in the state.

"I've never had anyone turn me down when offered a test," Dr. Wara says. In fact, evidence suggests that more than 70 percent of women will accept a test if offered. "HIV rates are increasing most quickly among young women, which means we really don't have any idea who is infected anymore."

Certainly no one knew that Maria Johnson's mother was infected.

Maria's foster mother, Heather, who was 42 and had already suffered 13 miscarriages but had no children, started taking care of Maria when she was a baby. At that time Maria's mother, a friend of Heather's, was in and out of jail and very sick on drugs. Heather didn't test Maria until another family member told her that Maria's older sister had HIV. Maria's mother then died of AIDS when Maria was 6 years old, but Heather didn't take her to the funeral.

Maria, the youngest in a family of 13 children, doesn't remember her mother at all. "I guess I look like her," she says. "They say she was a good person, but she made a wrong decision."

Cemeteries and flower gardens line the road to the Johnsons' mobile home in Daly City. Inside, pictures of smiling African-American family members hang on the walls.

Maria's pills sit openly on the kitchen table as a reminder to take them, but she hides them when her friends spend the night. Her friends don't know she has HIV. Maria, almost 13, doesn't see any reason to tell them, and Heather worries about stigma from her foster daughter's teenage classmates.

"I don't trip off it," Maria says. "I know I have to take my medicine, so I do, and then I go on about my business. The doctors, they say they can't hardly find the bug in my blood anymore."

Maria's foster parents called HIV the "bug in her body" when she was 3 years old and she wanted to know why she had to take medicine.

"Back then you had to drink it -- it was nasty stuff," says Heather. "We had to hold her down, she was so strong, and we held her nose and gave her water as a chaser."

Heather says Maria understands that HIV is more than a "bug."

"She knows the relationship between HIV and AIDS," she says. "She knows all about sex. She doesn't ever want to talk about it, but I don't think she's in denial. Sometimes she gets tired of taking her medicine and I have to remind her that it's for her own good."

Maria used to go to the hospital once a month, but now she goes only twice a year. "That's not more than normal kids," she says.

Heather, a retired dispatcher for the Police Department, says she never treated Maria as if she was different from any other child.

"They told me to wear gloves and be careful of her blood, but I didn't do any of that," she says. "Only weak people with AIDS want pity and sympathy."

The only acknowledgment of Maria's condition for which Heather is thankful comes from California Children Services, a state agency that pays the $10,000 to $12,000 a year for Maria's medicine.

Maria, who likes math best, prefers model sports cars to stuffed animals. She brought home good comments from all of her teachers today and reads the entire progress report aloud, her voice rapid with excitement.

"Yeah, I'm tight," she says. Heather kisses her on the cheek.

Maria has to improve her grades, currently C's and D's, before she can have a few of her birthday gifts. But right now Maria is more interested in trying out her new bowling ball than studying for her science test this week. Before she leaves for the alley Heather reminds her to take her medicine. Maria groans, but she swallows the pills, making a face.

"I guess I'm just an optimist," Heather says later. "I feel like this child was placed with me for a reason, and I don't think that reason would be to die. Of course, you live one day at a time, and you hope that maybe tomorrow there will be a cure."

Metko says he harbors no hope of a cure for himself, but he plods to the hospital for the treatments to extend his life. He watches a needle slide into his upper arm with detachment.

Cheery pictures of rainbows, stick people, and animals with five legs -- drawn by other pediatric patients -- hang from the walls of 6 East at UCSF Medical Center. Medical equipment and stuffed animals are scattered around the room. Metko raises his eyebrows with boredom, his headphones hanging around his neck. He estimates that he has spent 15 percent of his life at the hospital. Now he comes once every eight weeks.

The nurse prods his arms and wrists with mild frustration. She had to take the first needle out because she missed a vein. "This is what four years of heroin will do to your veins," he says. "Mine are all scarred, or they've collapsed. There's hardly any good veins left."

Manio and the other nurses bustle around Metko in a complicated dance of needles, blood, hands, and color-coded vials for lab tests and a T-cell count. After they finish he waits calmly, expressionless, drumming his fingers on the blue armrests.

A doctor brings him a grocery bag overflowing with medicine. At the end of the visit Manio hands him $20. She pays all the patients to encourage them to come in for their checkups.

Unlike many of Manio's patients, Metko is not poor, but he is remarkably aware of other people's suffering.

"The world is going to hell," he says. He happily calls himself a misanthrope. "I just can't imagine bringing a child into the world right now. Either people are making insane amounts of money, or they have seven kids and three jobs and they're making just enough to have a one-room apartment, and they can't even buy the good cereal, they have to buy the generic cereal. Nobody should have to buy the generic cereal."

Now, eight months after that hospital visit, Manio has retired from practice at UCSF, and Metko says he has fought most of his demons.

"I'm as healthy as I've ever been," he says. "My life is stable -- I've got a steady job and I'm getting along with my grandparents. I went to Holland with my band, got hooked on heroin, but I kicked again. That was really tough -- harder than it was the first time around. But this is a really creative time for me, mostly because I'm constantly encountering things from my past and resolving them."

He catches the light rail to meet his dealer and buy more weed. Two stops later, a girl with dyed red hair and a lip ring gets on; they recognize each other. He gives her a hug and then sits back down. She stares out the window for a while.

"Hey, Metko, remember Laurie? She died. Of a heroin overdose." The girl stares out the window again, then yawns.

"Really?" Metko seems interested, but not surprised.

"They found her in St. Mary's hospital on the sixth floor, passed out in the bathroom. We're having a memorial for her tomorrow, if you want to come."

"Well, may she rest in peace," he says, standing up. It's his stop.

Metko is one of 479 children in California known to be born with HIV and then diagnosed with AIDS. He's one of more than 8,000 children in the United States who were infected with HIV at birth. He eats breakfast every morning, brushes his teeth every night, and doesn't dwell on his probable early death.

But some gray mornings when he wakes up, he wishes his life weren't such a game of chance. Wishes his grandmother didn't nag him to take his pills on the hour. Wishes he didn't have to worry that the woman of his dreams will be too afraid of AIDS to marry him. Wishes he didn't have to worry that every little cold might be his last. Wishes he weren't born with HIV.

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