Canadian Health Network

Send this to a friend Print-friendly version Is there a cure for HIV/AIDS? What makes HIV a disability? HIV/AIDS and child care Past Articles Subscribe to our Healthlink newsletter

Shari's son was only three months old in 1993 when she was diagnosed as HIV positive. Soon after, her son was given the same diagnosis. Now, thirteen years later, there are hundreds of HIV positive kids in Canada, including Shari's son (many, now older than 15, are counted in the adult statistics.) As the first generation to have grown up with the virus—and their parents the first to know the challenges of having HIV positive children—these kids and their families have been groundbreakers, pioneers who have never known anything else but being HIV positive.

Getting tested is the first step

As soon as Shari discovered she was HIV positive, her baby was tested for the virus. That quick action, according to Robyn Salter, a social worker on the Infectious Diseases team at the Toronto Hospital for Sick Children, is the ideal way to deal with any suspicions of infection. "It's better to be tested, to know the HIV status and, if needed, to start treatment, but a lot of people are afraid to get tested because of the stigma and because they're afraid of discrimination." Experts encourage parents who are concerned their child might be HIV positive to get the child tested as soon as possible." Life can get more difficult if they get sick before treatment. HIV medications can help children stay well and have a good future," Salter adds.

For Shari and for other parents of HIV positive babies, the early years are wait-and-see years. "We were really on pins and needles to see how well [my son] would thrive," Shari recalls. "There were touch-and-go situations but he did really well." Different medications were given to him and, when developmental milestones weren't met, changed again and again.

Who needs to know?

A whole new set of decisions faces the parents of an HIV positive child once the child starts to socialize or enters the school system. The first is disclosure—both to the child and to the rest of the world. "We kind of had a pay-as-you-play approach," says Shari. "As he started to ask questions, I'd start to give him information." When he asked why he had to go to the hospital and other kids didn't, she told him it was because his blood was special; later, when asked why it was special, she told him he had a virus. Finally, once he was about nursery age, he was told the name of the virus. That forced Shari to make a decision. "I felt I should disclose to the nursery that he had the virus," she says. "I didn't want him to be blurting it out and them freaking out."

As it turned out, there were pros and cons to disclosing to the school and later, in a new situation, Shari decided against discussing her son's status. "There have been times when I wish we could tell," she adds. "His medications are affecting his school work and also he has a learning disability. It would be easier to get extra help." But it's important for anyone who is HIV positive or caring for someone who is to know that disclosure is a personal decision, and counselling and support are needed before choosing whom to tell and when.

Adolescence brings new concerns

As the years go on, the HIV-related issues don't just affect parents or caregivers; kids with the virus have a whole set of their own concerns as well. For Shari's son, who is now 13, one concern is relationships outside of the family. "I'm really concerned about his emotional state, about him carrying a secret," says Shari. "I see him bonding with friends; he has a girlfriend now. I wonder how he can have complete intimate—not necessarily physical—emotional relationships without disclosing it." Shari wouldn't discourage her son from being honest; she counsels him to make his own choice. But she knows the potential pitfalls of disclosure when disclosure isn't really necessary yet. On the other hand, her son doesn't have anyone outside of the family to talk to when times are tough.

The burden of silence can take a toll—particularly on teenagers, who tend to look to their friends when they have a problem. Still, the fear of feeling different from everyone else—especially at a time of life when it's so important to feel part of a group—keeps many HIV positive teenagers silent. And, according to HIV positive youth of the Tague le mouton, a support group in France for HIV positive youth, the desire to be seen as the same means that sometimes teenagers do not take their medication if taking it puts them at risk of being discovered. In addition, HIV positive teenagers are just as likely as their peers to rebel; that sometimes takes the form of refusing to take medication, just to see what would happen.

Relationships and intimacy – a difficult balancing act

When the time comes for relationships and intimacy, HIV positive teenagers face extra challenges. "For anyone starting a sexual relationship, disclosing to their partner is difficult because they risk losing the partner," says Salter. "At the Hospital for Sick Children, we counsel everyone to first get to know the person well enough to disclose this very personal and stigmatized information but not have sex before they disclose. It's a difficult balancing act. It's so important for people of any age, particularly teenagers, to have supportive people to talk to."

When Shari discovered that her son was worried about whether it is possible for HIV positive men to have children, she discussed it with him. "I told him it's not as easy as it is for other people – it's a process, but it can happen," she says. "The weight of the world lifted off his shoulders." If an HIV positive man is considering fathering a child, he and his partner should first get in touch with a specialist to discuss the options. If an HIV positive woman gets pregnant, there are ways of keeping the possibility of transmission to the infant to a minimum; in Canada, the transmission rate is incredibly low – less than two per cent. "It's really new ground," Shari adds. "Lots of HIV positive women are planning pregnancies now."

Letting go is hard

And there are other more practical issues, like the difficulty of letting maturing HIV positive children have some independence. That means helping them manage their own medicine, and making them understand how important it is to take it all the time without terrifying them. Shari's son keeps good track of his own medication but still, on school trips, he has to hide the fact that he takes anything. "It's a responsibility I have to give him," says his mother. "I'm really concerned about it, but I have to trust him."

For so many HIV positive kids like Shari's son, the future is bright in many ways. His health is stable; he's an otherwise normal 13-year-old kid who plays football and loves music. He's been through a number of different treatments to maintain his good health but he still has options. Long-term side effects of the drugs he does take are cause for concern but generally, Shari says, the outlook is really positive.