“It’s a Part of Me”: Meet the Young People Born with HIV

The number of children born with HIV peaked in the 1990s, amid what were called the “twin epidemics” of HIV and crack. Often, these women only found out they were HIV positive when doctors discovered that the newborns had the virus. Most of these babies died uncounted, so it’s not known how many there were.

Things changed in 1994, when a breakthrough study in the New England Journal of Medicine found that administering a drug known as AZT to pregnant women reduced the rate of transmission to their babies. The CDC now says that the chance of a woman on proper treatment passing the virus to her baby is 2 percent or less.

Shortly afterward, the CDC began recommending routine HIV testing for pregnant women, and treatment for those who test positive. The push for testing has dramatically reduced the number of children born with HIV: In 1992, the CDC reported an estimated 900 cases of children born with HIV. By 2007, that number had dropped to 73.

For the young people whose mothers didn’t get treatment, it’s a daily challenge to endure the stigma and health struggles passed down to them. Some of them find help at places like the SPARK Center in Boston. One of only a handful of such programs nationwide, the center offers comprehensive medical and social services to HIV-positive youth and their families, beginning when the children are old enough for daycare.

That’s where we met Keith, Tom, and Liza, some of the young people featured in ENDGAME: AIDS in Black America.  

All three were born with HIV. But as we saw in the film, they are a lot more than their positive diagnosis. We caught up with them to see how they’re doing now.

Keith

In the film, we met Keith and his grandmother, who raised him as her own in a house teeming with children. The confident young man credits his survival and good attitude to having the support of his family.

Today, Keith is studying early childhood education at a community college in Boston. He wants to work at the SPARK Center, the daycare that brought him so much inspiration. Already, he works there part-time, playing with the children and working on a lesson plan under the teachers’ supervision.

Keith said that he wants to give something back to the center that inspired him. “Pretty much everyone there was [HIV] positive, all the kids,” he said. “And if you weren’t positive, then someone you knew was positive. So there was nothing to hide. … It was like we’re all the same. It gave us that foundation to be strong. We had each other.”

At this point, Keith said, he’s gotten used to living with the disease. “It’s a part of me,” he said. “It has to be.”

Trecia Mayo, the SPARK Center’s youth program coordinator, said she’s known Keith since he was in elementary school. He didn’t start out as an eager student, she said, but he loved working with children. “He’s just an absolute natural at it without any training whatsoever,” she said. “And it was like, if you want to do this, you need to go to school. And that’s been his motivation, those kids.”

Liza

We met Liza, also born with HIV, as Keith’s girlfriend in the film. She has a young daughter who is nearly four years old — and HIV negative. Liza didn’t reveal her identity in the film because she wants to protect her daughter’s privacy, she said. (Liza isn’t her real name.)

Liza wanted viewers to know that there’s more to her than her HIV status. “I’m a young, black woman who’s obviously positive, born with it, but who’s been taking care of herself,” she said.

But Liza said she didn’t always look after her health. She fell out of care as a teen, and was frightened at first when she found she was pregnant. “Before I wasn’t being very responsible,” she said. But she worked with doctors to ensure her child was born HIV negative. “Knowing I have her, I am very responsible now,” she said.

Now 23, Liza has her own apartment and works as a teaching assistant at a daycare. She plans to start school in the fall, working toward her goal of becoming a daycare teacher.

In her free time, she plays with her daughter, taking her to the park and reading books. Liza says she’ll explain her status fully to her when she’s ready. “I talk to her about it, but she doesn’t understand yet,” Liza said. “She does know that Mommy takes medicine everyday, and Mommy is OK. That’s what she really needs to know right now — that I’m OK.”

Tom

We met Tom in the film as he rapped alongside Keith about living with HIV and losing his brother and mother to the disease. He’s still writing, but at 22, the introspective young man is taking time to figure out his next step in life.

After high school, Tom joined the Job Corps, a federal job-training program. He tried welding, and then business, but neither seemed to fit. His HIV medication affects his memory, and he struggled with the work.

Then Tom started to get into public speaking and doing outreach around the disease, passing out condoms and educating people about HIV. He also decided to speak about being HIV positive in front of the Job Corps student body. “For the first time, I felt like I actually had power over it,” he said. “This is something I lived with. I could tell my story. I spoke, and everybody respected me, and that was a changing point for me.”

Then about seven months ago, Tom moved with his family down to Florida. It’s been a difficult adjustment, he explained, because the stigma is stronger there than back home in Rhode Island. For example, a recent date ended badly. “She was afraid to hug me,” he said. “She said that she was scared. I thought that was kind of shocking. I’ve never really met someone around my age who came across like that: ‘I can’t hug you.’”

Tom is looking for work now, considering returning to public speaking or the outreach work he loved. ”I may sometimes feel like an outlaw, because I’ve met people that don’t like the skin that they’re in because they have the disease,” he said. “When I come along and I share my story, it inspires them sometimes.”