Growing Up With HIV: The Stories of Children Born Positive
Since 1984, an Estimated 523 Babies Have Been Born HIV Positive in Canada; What's It Like Navigating School, a Social Life and Health Care for a Child Born With the Virus?
A budding advocate for youth living with HIV, Josh joined a panel of experts at the International AIDS Conference held in Washington, DC, in July 2012, to discuss his life growing up with the virus. Studies presented during this session indicate that there may be some adverse effects of ART on growing children. Dr. Jason Brophy, a pediatric infectious diseases specialist at Ottawa's Children's Hospital of Eastern Ontario, agrees and is currently conducting studies to look for kidney and bone health problems and treatments for high lipids among his young patients. Some studies have shown that among children living with HIV, there is a higher incidence of delayed motor and language skills and attention deficit disorder (ADD). Other studies have shown that many adolescents with HIV experience depression and other mental health issues.
During his session in Washington, Josh described how the learning disability dysgraphia (a deficiency in the ability to write) and ADD have been issues in his life. He rhetorically asked fellow panelists: "What causes these problems: HIV or the meds?" His query was astute; it's exactly what researchers hope to answer regarding the mental health and physical and cognitive development of growing children.
Despite these health issues and the fact that children can be quite ill when initially diagnosed, Dr. Brophy says that once they are in care and on treatment when it's deemed necessary, "the vast majority of children with HIV in Canada are the picture of health."
As science continues to look for answers to some of these issues, life goes on for children growing up with HIV. Both Sage and Josh have known about their HIV status from an early age and both are still learning about how HIV affects them at different stages of their lives, how to handle secrets and how to manage their health and emotions along the way. "I have known all my life that I have HIV," Josh says. "But I didn't really know what it meant until I was about 13. That's when I learned that HIV was an STI (sexually transmitted infection), and that I had an STI, and I hadn't even had sex yet." Josh describes the proverbial sex talk as "not the average sex talk" and says he was "freaked out" to learn that he would one day be discussing his HIV status with sex partners.
Fortunately, Josh has mostly had positive experiences with disclosing and feels good knowing that his longtime friends support him. Before he shared his status with his friends, Josh would respond to questions about his health with partial truths but rarely the whole story. Then, when he was 14, he felt the need to tell somebody. On their daily walk home from school, Josh simply came straight out and told his friend. "She acted surprised, gave me a consoling look and asked if I was OK." After assuring her that he wasn't about to die, Josh explained that he was born with HIV and offered to answer any questions she might have. That was six years ago and, while they don't see each other often, Josh and his confidante keep in touch and will always have a special bond.
In recent years Josh has shared his status with most of his close friends, all of whom are supportive. When he thinks about disclosure, he follows the wisdom of a slightly older peer who advised him: "If somebody doesn't like you because you have HIV, fuck them!" When he's feeling frustrated or angry because of unresolved issues, he says, "I just kind of handle it through chilling with my friends -- I find that peaceful."
As for Sage: "I know a lot of people, but I don't have a lot of friends. I am too shy." She does, however, like to talk about her friends at Camp Moomba (which Josh also attended) and a very special counsellor in whom she confided about her HIV status. Moomba is a summer camp in British Columbia where kids from across Canada impacted by HIV can connect and support each other. Friendships formed there can last beyond camp years, as they have for Josh. The experience is invaluable. Sage says that "the only other kids I know with HIV are at Camp Moomba."
Both josh and sage have hopes and dreams for the future. Sage, who likes "everything about school," hopes to someday become a veterinarian. "I like riding my bike and shopping," she says, giggling, "and shoes and clothes." She looks to her mom, a strong advocate for positive Aboriginal women in Manitoba and across Canada, as a role model and wishes she could travel with her to learn and teach about HIV and meet other HIV-positive children. "I would like to be like mommy," she says proudly. Her mom, like me, hopes to affect attitudes so that her daughter can live a more "normal" life. "There is a lot of ignorance around us," says Sage's mom. "Because of the stigma in our community, we have to remain secretive."
Sage, who loves her community, hopes to someday become a jingle dress dancer (participate in the jingle dress dance at a powwow); ironically, the colourful, decorated dress is considered a healing dress. As for Josh: "My mom always told me to follow my bliss." For him, that means one day opening his own auto shop -- and anything to do with the outdoors. Both Josh and Sage hope to someday have families of their own. They also share two dreams: that the day will come when they won't have to take meds anymore and, of course, that a cure is found.
Since shortly after her HIV diagnosis in 1993, Shari Margolese has advocated for people living with HIV to ensure that they have an opportunity to be meaningfully involved in the research, programming and policies that impact their lives. Shari is a leading advocate for reproductive justice for people with HIV and a regular contributor to The Positive Side.
This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication The Positive Side. Visit CATIE's Web site to find out more about their activities, publications and services.
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