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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.
Where
to go for more information
There are many resources for children who have HIV or who have a loved
one with the virus:
- The
Teresa Group is associated with the HIV/AIDS team at the
Toronto Hospital for Sick Children and provides support, practical assistance
and
links to many other helpful organizations.
- Canadian
AIDS Treatment Information Exchange is partially funded
by the Public Health Agency of Canada and brings together information
for people living with HIV and AIDS as well as their families, caregivers,
AIDS organizations and health care workers.
- Kids
Help Phone 1-800-668-6868 has HIV and AIDS related information
on its site as well as a phone number that children can call to get
in immediate touch with a counsellor.
- AIDS
hotlines are available to people in every part of the country.
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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.
"HIV
medications can help children stay well and have a good future."
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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.
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