Kids who grow up with HIV and AIDS face life and death health issues. But often their heaviest burdens are emotional. This week WNYC is presenting a series of reports on young people who were born HIV-positive, having been infected at birth. As Sharon Lerner reports, for many of these kids HIV combines with poverty, trauma, and the usual travails of adolescence to wreak havoc on young lives.
For most young people born with HIV, life can be divided into two parts: the time before they realized they had the virus - and the time after. In an attempt to keep their children ignorant of their infection some parents and guardians become stealth care takers. They ferry their kids to doctors, administer pills, carefully monitor lab tests – and never tell them why. That’s what happened to Marielle:
Marielle: 3:50 I already been taking medication since I was born. I used to always ask, and they’d give me these big words, so I’d just never ask again.
Marielle, like the other teenagers in this story, asked that her real name not be used. As a child, she made up her own explanation for the pills she was asked to take: she decided she had “weak blood.” The adults around her let her think that – and also tidied up the story of what happened to Marielle’s mother:
Marielle: She died of AIDS. But before they told me that she died of smoking.
Having found out about her condition less than a week before this interview, Marielle can already think of one thing she would have done differently had she known about her infection: She wouldn’t have become “blood buddies” with her best friend.
Marielle: Like you know, like the friendship things, like when you cut your hand, you share blood – that. Blood buddies.
The risk of infecting others is only one of the dangers of not telling kids about the virus. Jeff Birnbaum, a physician at Kings County Hospital in Brooklyn, has treated many kids who didn’t know they were HIV-positive:
Jeffrey Birnbaum Typical scenario is the mother died of AIDS and everyone in the family knew about it but they wanted to protect the youngest members of the family, so they didn’t tell them. They were children at the time, why tell them what their mother died of? They just deal with the fact that their mother died. And then they grow up, they become teenagers, they start asking questions and finally someone breaks down and tells them the truth about what their mother died of and they get really pissed off. They go out and get themselves tested. And they’re positive, they find out at age 16 they’ve been living with this their whole life.
Even though kids eventually have to learn about the virus, there is no easy way to get the news. Bella is a solid-looking 19-year old, who wears her hair pulled back in a tight ponytail. When we first met last summer, she was wearing a gray sweatshirt almost loose enough to disguise her pregnant belly. When she was 3, both of Bella’s parents died of AIDS within 6 months of each other. But Bella’s dividing line later- in 1991.
Bella I used to go to support groups every Tuesday. And I didn’t know it was a support group for kids who were sick. And I was on medicine then, I didn’t know, I thought it was just vitamins. That’s what they told me. One day, I guess they thought I was ready to know – oh, because some girl in the group mentioned that she was sick and that’s how I found out about it. When she told me and I said, ‘Wow. If I found out I was sick, I think I’d kill myself.’ And then they told me.
When I went to junior high school, about 11- 12 years old. That’s when it really hit me. Like wow. That’s when I started trying to commit suicide. I even tried to jump off a roof and everything. And I made a suicide pact with a girl to jump off a roof and she jumped and I didn’t.
Bella’s story is not unusual. For many HIV-positive teens emotional issues can overwhelm the medical problems they face. The psychological fallout from the virus often intensifies as kids get older, date, and grapple with the meaning of their infections. Steven Nicholas, a pediatrician at Harlem Hospital, says he’s seen a wave of mental health problems among his HIV-positive patients.
Nicholas: As these kids got older, at least a subset of them, they began to develop rather severe behavior problems. Some of them got kicked out of school. Some of them were sexually acting out. Some simply couldn’t sit still –were very hyperactive. We saw the occasional child who was suicidal. As with Bella, who grew up being bounced from place to place – and landed in prison by the time she was 17 – society tends to be less accepting of HIV-positive kids the older they become. Nicholas: People had a soft spot for babies. These older kids – not so easy. Not so lovable. They hurt inside. They’re oftentimes angry. They’re oftentimes behaviorally out of control. It’s a truism for kids who need foster care that adolescents are hard to place. Adolescents with HIV who are sexual or who are acting out - almost impossible. Very difficult. For Bella, getting older – and starting a family – seems to have helped her become more responsible. As her due date approached Bella prepared herself to be a mother.
Bella: I’m gonna be there. Because my mother wasn’t there.
Without medical intervention, the chance that an HIV-positive woman will pass on the virus to her baby during birth is about one in four. But a strict regimen of anti-viral drugs taken during pregnancy reduces the risk of transmission to less than two percent. For most of her teen years, Bella took her medication only sporadically.But with a baby on the way, she became more vigilant. When we first spoke last July, she had been taking her pills for two months straight. Still, she worried over the possibility of infecting her son:
Bella I’m just hoping he don’t come out sick and go through what I went through. That’s my only biggest fear.
Months later, her fears have been all but put to rest:
Bella I had my baby – had a little boy. October 1. At 8 pounds, 9 ounces. 19 inches. I had a c-section. 1:16 And he came out HIV negative. 2:11 His name is Adonis and I think he look like his father. OK. [Baby noises] He got brown eyes, little mouth, no lips, um, he got my cheeks, that’s it. Chubby cheeks. He’s a little dark now. He was red before but he’s getting color. He’s a good baby. I’m putting on his pajamas, changing his clothes, putting his arm through the sleeves, putting his other arm through the sleeve, now I’m going to zip him up. 5:20.
Bella feeds Adonis formula, since he could get the virus through her breast milk.
Lately she’s been taking her pills religiously.
Bella: I take them now, I have to take them to be strong for my son. Have to be here for my son. He’s given me a reason to do it.
But even as she carefully tends to her son, Bella’s had a more difficult time safeguarding Adonis’ father against the virus. Though her boyfriend is not infected – and is aware that Bella is – they don’t use condoms.
Bella It’s not what he wants – to get sick or anything. But he wants to be with me and he’s going to take the whole package. We’ve talked about it a couple of times but, you know, nothing happens. Like I say it, but he say he doesn’t care. I mean- that’s all he really says is that he doesn’t care. And for me not to worry about it.
Bella has plenty else to worry about. She can’t be completely sure Adonis is HIV-negative until his blood is tested for the virus one last time. That will happen in April, when Adonis turns six months old. Chances are good that the test will confirm that he has escaped infection. Bella feels sure of it. For the first time in a long time, things seem to be going her way.
*Not her real name