She was born with HIV and now she teaches others how to live with the disease
The Healing Tree is made of mosaic and metal and mourning. Its branches dangle with the photos of children who were born with HIV but didn’t survive it, their smiling faces glued onto butterflies or hearts that catch the summer sun in the lobby at the Mailman Center for Child Development.
They were part of the Kool Kids, a support group for children born with HIV, started by social workers and a psychologist at the University of Miami’s Miller School of Medicine HIV/AIDS clinic in 1995, just as researchers were discovering medical protocols that would dramatically change the outlook on the disease.
Each photo on the tree — there are about 30 — represents a child who lost the fight. But the support group ended two years ago on a hopeful note, as babies born in Miami-Dade County with HIV became a rarity and the children in the pediatric HIV/AIDS program no longer felt the need for a support group to help them cope.
“It is a success story. I never would have thought that back in the ’80s, where we would diagnose five new kids a week,” said Ana Garcia, an assistant professor of clinical pediatrics who runs the HIV pediatrics program for the Miller School.
Medicine and awareness has changed the landscape of the disease in ways those early healthcare workers couldn’t imagine.
“In the early years, there were 450 kids in the program. When it ended, 150. That’s phenomenal,” Garcia said.
Those struck by the illness in what healthcare workers call “the bad old days” needed the support of other kids like them. The tree, with its memorial photos and poetry written by the children, was a way to make sure the voices of the littlest victims weren’t drowned out.
This was where I could go and people would understand, even when people at home might not.
Quintara Lane, a participant in Kool Kids for children born with HIV
“Damn, bro, I see you left us. Everyone out here is trying to deal with the pain of knowing that you are gone,” wrote one. “It kills me to know I never got the chance to say goodbye or have our one-on-one talk. You are the brother who made sure I didn’t do anything stupid with my life. And I thank you for that.”
“Dear virus,” wrote another, on a heart-shaped piece of plexiglass. “You are very MEAN. You crawl up in people’s bodies and tear them down inside. You take our white blood cells for a ride. You make me so sad I just want to hide. Why can’t you break the rules and leave us alone?”
Quintara Lane was a member of the group. She remembered the first time she walked into the support group and saw a dozen other children just like her — born with HIV. She was relieved.
“I was able to see other faces like mine. They were going through it with me,” she said.
She was 9 or 10 at the time, being raised by her grandmother. Her mother would die a year or so later of HIV/AIDS.
Effective new treatment
But Lane, now 29, is part of a different generation. She was born with the disease just as medicines were being developed that would keep the deadly virus at bay. Now she teaches others about how to live with HIV in her job at Broward Health as a community advocate/HIV tester and counselor. And she says the Kool Kids support group was key to her survival.
“This was where I could go and people would understand, even when people at home might not. My best friend was part of the group,” she said. Her best friend and a boy she liked in the group both died. But she survived.
And she has two children of her own — both born without the virus thanks to the medicines and protocols developed since the AIDS crisis. She feels, she said, “grateful and blessed.”
“I have two kids, 11 months apart, and they don’t have it. It’s a beautiful thing that this is the next generation and they don’t have to be born with it, the way I was,” she said.
“It shows how far the research has come. Against all odds — that has always been my motto.”
Though mother-to-child transmission has nearly been erased as a cause of HIV infection, last year at Jackson Health System, Miami-Dade County’s public health system, there were five cases.
“It’s a very odd blip. We don’t usually see that,” Garcia said.
But for those five HIV-positive babies, the future is much brighter than in Lane’s generation.
“The outlook for these newborns really is wonderful. It’s very different from the first wave of kids from the ’80s because we know to start medications right away,” Garcia said. “So I’m expecting to dance at their weddings.”
Kool Kids as adults
Of the children who went through the support group, the oldest is 37. Two others, now in their early 30s, met in the group and eventually married. They have a 5-year-old daughter who is HIV negative.
“With our young people, part of their sadness is always wondering ‘Am I ever going to have a family? Can I fall in love? Will someone love me? Can I have children?’ Well, they certainly have proved that they can,” Garcia said. “Since 2003, the young people that have gone through our program have delivered 85 very healthy children. We have tested all of them and we know that they are HIV negative.”
Lane is proof of how much has changed. When doctors first told her about her diagnosis more than 20 years ago, they used the video game Pac-Man to explain how she had to manage her complicated medical regimen — up to 35 pills a day at the time.
“The way they explained it, Pac-Man was the bad guy, and the ‘vitamins’ were going to beat Pac-Man,” she said.
85The number of HIV-negative children that have been born to participants in the Kool Kids program.
But as she got older, into middle school, she periodically stopped taking her medicine.
“I had my days that I called an HIV holiday. I wouldn’t recommend that to anyone. But I was tired. I was tired of taking medication every single day. I was tired of living with side effects. I was tired of a constant reminder every time I swallowed pills that I have a virus that I have absolutely no control over. It wasn’t my fault that I got this.”
For a long time after that, she didn’t think she could ever find someone who would love her knowing her status, she said. When she met the man who became the father of her children, he brought up the idea of a baby and they went to her doctor together to learn the safest way to have children, which included a course of AZT for the baby after birth, as a precaution. She had her daughter, JoselineJ, two years ago.
“I did everything they told me to do, to a T,” she said. “When they told me she’s HIV negative, I cried. I was like, ‘Oh, my God, I went through so much stigma and discrimination and she won’t have to.’”
Her son, Mj, followed 11 months later, also HIV negative.
“What I hope for my children is that they will be able to see an HIV-free generation. I hope they will be well educated …and know not to judge anyone. I didn’t have a choice about my status. But they do. And they have that choice because I did everything I could possibly do to make sure that they are negative. But I can’t do everything to make sure they stay negative. The rest will be on them.”
In February, some of the Kool Kids — including Lane — will gather at the Healing Tree to add the photos and names of those who have passed away who were in the group. And in a few years, when Garcia retires, she hopes to take the tree with her and set it up at home.
“There are so many of them and you don’t want to forget any of them,” Garcia said.