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?
Shortly after the birth of my only child in 1993, I was diagnosed with HIV. Six weeks later, my son received his diagnosis: HIV positive. Those were the dark days of HIV and the prognosis of babies born with the virus was grave -- many did not survive beyond their second birthdays. As a mother, I can tell you that those early days were very scary. Our family is one of the fortunate ones to have survived until potent antiretroviral medications became available.
HIV can pass from an HIV-positive woman to her child during pregnancy, during delivery, or after giving birth if she breastfeeds her newborn. Thanks to effective treatments and advances in care, the risk of transmission from mother to child (vertical transmission) has dropped dramatically in Canada, from as high as 33 percent in the early '90s to less than two percent today. This reduced risk, coupled with the fact that HIV has become a chronic manageable condition for people who can get care, has led many more people living with HIV to have children.
The issues faced by children growing up with HIV are varied and complex. First and foremost, they are kids and young adults subject to all of the joys and challenges that other young people experience growing up -- from the terrible two's to cramming for high school exams, from finding a first job to going on a first date. But over and above the usual bevy of growing pains, they have additional concerns, such as health issues and deciding if and how they will disclose their HIV status at school and to their family and friends. Of course, these are issues that adults living with HIV face, too, but the context is different. As my own son so wisely informed me, "Mom, I know you know what it is like to be a teenager and I know you know what it is like to have HIV ... but you have no idea what it is like to be a teenager with HIV." Today, thanks to the advancements in HIV treatment that have prolonged my son's life and the lives of many (but sadly not all) of his peers, I am humbled and grateful to be able to help their voices be heard, as they share stories of strength, fear, love and hope.
"Yes, I am brave." These are the words of 10-year-old Sage as she describes her decision to talk about growing up with HIV. Sage chose not to use her real name because her friends don't know that she has HIV. "My mommy says it's our secret because other kids can be mean," she says. As a pre-teen, Sage has known for only a short time that she is HIV positive. "I don't really know anything about HIV yet. I do know I have special blood though." She says that her doctors are teaching her to understand things. She bashfully admits, "I'm shy, so I don't ask many questions." Fortunately, Sage's mom, who is also HIV positive, accompanies her to every hospital visit and asks the doctors questions in front of her daughter. Sage likes her doctors, who she says "are nice and care about me."
Because Sage's mom tested negative for HIV when she was 12 weeks pregnant, she did not receive treatment in time to prevent the virus from being transmitted to her daughter. Then Sage was hospitalized with pneumonia just days before her first birthday. "She was greyish purple and her life was leaving her body," recalls Sage's mom. An HIV test was requested and three weeks later, the family was shocked to learn that Sage and her mom were HIV positive, and that her mom had seroconverted while pregnant. It is cases like Sage's that lead some advocates to call for ongoing testing during pregnancy.
Sage, who has remained stable on her first regimen of Kaletra (lopinavir/ritonavir) and Combivir (AZT/3TC), says, "I have taken meds my whole life ... I don't like taking them because they make me feel like I'm going to barf." She copes by drinking lots of water. She admits that sometimes she forgets to take her meds, but her mom reminds her. Now in grade 5, Sage is already a strong advocate for her own health care: "I want them [the meds] changed to something that won't upset my stomach. I'm going to tell the doctor."
Like Sage, 19-year-old Josh began taking antiretroviral therapy before his second birthday. Whereas Sage was born in the era of combination antiretroviral therapy (ART) and has not developed drug resistance, Josh was born early in the epidemic, when AZT monotherapy and other less potent therapies were the only options. "There were a lot of pills, they were hard to swallow and they tasted bad," he recalls of some of the more difficult-to-take early treatment regimens. As a result, his HIV is resistant to two classes of drugs, nukes (NRTIs) and non-nukes (NNRTIs). Now a young man, he has faced serious challenges with medication.
Josh has also encountered disclosure dilemmas when it comes to his meds. When he was 10, he wanted to have sleepovers with his friends. Although he was able to do this, he had to make sure he either took his pills before leaving home or packed them in a bottle and discreetly took them with water from the tap while he brushed his teeth. "Other people never asked questions because no one ever saw me take my meds," he says. "I kept it really low-key."
In the recent past, "pill fatigue," a desire to avoid revealing his meds at work and partying contributed to a less-than-perfect adherence record. "It made me feel more normal and in control of my life to not take them," Josh says. "It's hard to drink alcohol and take HIV meds." His inconsistency with taking meds created serious health problems, including a low CD4 count, an increasing viral load and a low platelet count. "I didn't know it was killing me to not take them," he says in retrospect. More recently, Josh switched to taking his pills once daily. Because this is relatively easy, his adherence has improved, his CD4 count has increased and his viral load is now suppressed. At 19, Josh's options for HIV therapy are limited, emphasizing the need to discover new ways to treat HIV.
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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