Telling kids they have HIV is a parent's worst nightmare.
Nina Buffa had Lyme disease. That was
why she went to the doctor so often for blood tests. Why she took
antibiotics with every lunch. Why she was forced by her mother to
drink bizarre cabbage-and-grapefruit-juice cocktails every morning.
Or so Nina believed -- even as she watched her baby sister and
then her mother succumb to AIDS. On her deathbed, Nina's mom
insisted to her 12-year-old daughter, "You're the lucky one in the
Nina, now 15, never questioned the lie set forth by her mother
and perpetuated by relatives, family friends and even doctors in her
rural Howell, New Jersey community. "It turns out I had HIV from
birth, but she was my mom, so I never second-guessed her," Nina
says, laughing bitterly.
Her mother always claimed that the elaborate deception was an act
of protection, an attempt to shelter Nina from the perceived
hardships of being HIV positive and to avoid the dreaded moment when
Nina might blame her. And yet, far from protecting Nina, the lie
endangered the girl, keeping her from any prescribed anti-HIV
treatments or advice on healthy living. Instead, as Nina's mother
fed her antibiotics and weird drinks, the child's CD4-cell count
tumbled to 14 by the time she was 12.
Nina discovered the truth six months after her mother's death,
when she was diagnosed with tuberculosis. It was her first
HIV-related symptom, and the family friends who became her guardians
instructed a doctor to tell her the truth. The news enraged Nina --
she remembers racing through the halls of the doctor's office and
screaming at her guardians in the waiting room. Even now, three
years later, Nina recalls a sharp sense of betrayal: "Think of all
the stupid stuff I could have avoided if they had told me! How many
times did I fall down and bleed and have someone help me who wasn't
wearing any protection? Why didn't they tell me?"
It's a question with complex answers, and Nina's experience,
while extreme, is by no means unique. Hundreds, if not thousands, of
children are thought to be in the dark about their HIV positive
status or that of the adults who care for them. As in Nina's case,
the secrecy can wreak havoc on kids' bodies and minds. "It makes it
difficult to provide good care," says Jerry Cade, MD, an HIV
specialist in Las Vegas and a member of the Presidential Advisory
Council on HIV/AIDS. "Maybe years ago there wasn't much faith in
treatment, but now we can keep children healthy for years. If they
don't know, it can cause real problems for them and for their
Lori Wiener, PhD, coordinator of the Pediatric HIV Psychosocial
Support Program at the National Institutes of Health (NIH), calls
the decision of whether to disclose a child's HIV status "the
greatest struggle that a parent can have. Not only are they
disclosing a life-threatening disease, but that one disclosure often
leads to another."
The dilemma burns up computer screens day after day on an America
Online chatroom for parents called "Positive Living." There, a whole
range of disclosure questions arise, be it how to tell a child she
is HIV positive or how to explain that a parent has AIDS. Sheltered
in anonymity, chat-group parents like Gina of Hartford, Connecticut,
express their anxiety at the prospect of addressing the matter with
their kids. Gina got HIV through sex with a bisexual boyfriend, and
passed it on at birth to her daughter, now 7. "Talking about gay sex
with a young child is not appropriate, but that's what I may have to
do," she keystrokes one night. "I think it may just be easier not to
bother, to make something up until she's older."
Psychologist Nancy Heilman, PhD, who worked with Wiener for three
years at NIH, estimates that at least 25 percent of the children and
adolescents with HIV at the NIH clinic don't know their diagnosis.
No researcher has determined how many of the nation's more than
8,000 children with HIV are unaware of their status, but Heilman
believes that the figure is likely higher than her NIH experience
suggests. At NIH, she says, patients are generally more aware and
ask more questions amid its AIDS-friendly atmosphere.
Still, no expert could identify a pattern that makes disclosure
more likely -- whether families live in rural areas like Nina's,
isolated from services, or in cities, where black children comprise
more than half of the nation's pediatric AIDS cases. "I'd say about
a third of the time, families actively struggle with this," says
Donna Futterman, MD, of Montefiore Medical Center's Adolescent AIDS
Program in New York City. "Rich or poor, black or white, I doubt
it's easy for anyone."
Jodie Moss lives far away from the world of NIH, in a
working-class suburb of a city in the Southwest she doesn't want
named. As I speak to her, she rests her head against the windowpane
in her den, glancing out with a bittersweet smile at the backyard
antics of her 7-year-old son, Matthew. The boy, breaking in his new
Louisville Slugger, just cracked a curveball over his father's head
and is rounding the makeshift bases with flailing, celebratory arms.
"He's so normal, living such a happy life," Moss says, turning
away and sipping from a steaming mug ringed with red letters that
spell out World's No. 1 Mom. "Even though I know it's important to
tell him," she says in a whisper, "I just can't bring myself to take
that away from him. I don't know how I would explain it."
Moss knows there will be plenty to explain later on, a prospect
that terrifies her. One day, she'll have to tell Matthew that he has
HIV, that this status carries with it a social stigma and that
there's no cure. Even worse to Moss, though, is her conviction that
she'll have to tell her child why.
"Can you imagine having to tell your kid that he's got this damn
disease and that you gave it to him?" she asks. "I love that boy
more than anything else on earth, and I have to sit him down someday
and say, 'Matthew, you're gonna be this much away from dead your
whole life, and it's all because your momma was high and horny.'
Boy, is he gonna love me or what?"
Matthew, for his part, is oblivious. The chunky, freckled boy
with his mother's curly, tomato-red hair storms through the den and
heads for the kitchen followed by a tail-wagging white Siberian
husky named Drake. He summons Mom to serve up a glass of iced tea
and asks whether she saw his last hit, the one his father is still
fishing out of the bushes. Moss looks at the cactus-shaped clock
and, realizing it's time for Matthew's "vitamins," lays down his
doses of ddI, 3TC and Crixivan next to a plate of Nilla wafers. To
Matthew, who has no siblings, gobbling down the meds are as typical
a part of life as his regular doctors' visits and blood tests.
Moss and her husband, Paul, are paralyzed by a lack of easy
options. They want to tell their son the truth, but they can't be
sure how much he would understand. They fear that he'll blame his
mom, and this fear has created a strain that shows in the premature
crow's feet that bunch around Jodie's eyes.
While little research has been done on the problem, Wiener and
Heilman have compiled data that suggest the rejection, hopelessness
and confusion that parents fear rarely materialize. Their study of
99 parent-child pairs shows that most children who later found out
their status said they wished they had known immediately. But
parents tend to wait at least two years after diagnosis to disclose
it. In a 1996 paper on the study published in the journal
Pediatric AIDS and HIV Infection, Wiener and Heilman
conclude, "Most parents and children did not regret or feel damaged
by the decision to disclose."
That's common sense to parents who have disclosed from the start,
like Pat Broadbent of Las Vegas. Her 14-year-old daughter, Hydeia,
understood her diagnosis so well that she was caught by a TV camera
at age 6 explaining what HIV is to a playmate (see "She's Come a Long Way
From Baby," POZ, October
1997). She's even contributed to Be a Friend: Children Who Live
With HIV Speak, a compilation of writing and art by children
ages 5 to 15 that Wiener says some parents use to help kids
Pat Broadbent says she can't imagine having hidden this
information from Hydeia as the child bounced between hospital visits
and treatment protocols. "You want your child to participate in her
own care, and you can't do that unless she knows," says Broadbent,
who suggests that she may have felt less burdened by disclosure
since Hydeia was adopted. "It was never a secret, anything to be
ashamed of. It just always was."
Most experts believe kids with HIV already sense the truth but
take their parents' silence as a message that they should be ashamed
or worried. "I am of the philosophy that kids can face scary things
more easily if they can name and understand them," Futterman says.
"It's very obvious when there's something people aren't talking
about. That makes it much more frightening and teaches that there's
something so big and terrible in their lives that they can't even
talk about it."
And Wiener says full disclosure isn't always necessary right
away. "For certain children, saying, 'We're taking vitamins to stay
healthy and strong' may be all that child needs to know," she says.
"You only have to give enough information to help the child
understand his or her day-to-day experiences. You can add to that
More important is opening the communication lines, because
parents otherwise risk losing the trust of their children. "When a
parent lies to a child or doesn't give any information, the child
may come back later and say, 'What else haven't you told me?'"
Wiener says. "I'm not concerned that the child knows it's HIV and
HIV leads to AIDS and the whole virology. But I'm concerned about
the best health of the parent-child relationship."
Keeping quiet is a gamble Shelley Harrington-Buster of Gulfport,
Florida, is happy she didn't take for long. Harrington-Buster
withheld her son's diagnosis until he was 7, but found it impossible
not to let Ricky know as his father lay dying from AIDS in 1988.
Says Harrington-Buster, who is also HIV positive, "We kept it from
him because I simply did not know how to tell him. I didn't want him
thinking he was going to die. Then one day he says to me, 'Mom, I
have AIDS, don't I?' I was wigged out."
Yet in keeping with Wiener's observations, young Ricky didn't
want to know as much as his mother thought he might. "He just wanted
some simple answers," Harrington-Buster recalls. "I told him that
yes, he had this disease, that Mom and Dad had the disease, and [his
now-deceased adopted sister] Autumn had the disease, but his
[11-year-old] brother did not. And I said we were going to take a
lot of medicine to make us feel better."
From then on, Ricky, now 17, demanded he be kept abreast of his
situation. "I was brought up like an adult, always knowing," he
says. "I was definitely interested and wanted to know more about it.
I was there for every conversation. But no, I never blamed anybody
because there's no reason to. That wouldn't help anything."
Many doctors encourage parents to disclose to HIV positive
children, but they can't always force it. Heilman remembers one case
at NIH in which a 15-year-old girl had been HIV positive her whole
life and the mother refused to tell her. In protest, some physicians
refused to treat the child. "We all tried to address it, but she
just knew it would devastate the daughter," says Heilman. "The
mother accompanied the girl everywhere, and no one was allowed to
see the girl alone." In some states, laws would have forced that
mother to disclose. In Washington, for example, where Heilman now
practices, 14 is the age at which a child must consent to any
Wiener and Heilman say new AIDS treatments and increased societal
acceptance of people with HIV should relieve parents of some of
their fears. A mother now has reason to believe that her child might
not die from HIV and could experience a relatively healthy
childhood, they say. These changes could make disclosure issues less
But Sylvia York of St. Louis remains unconvinced. York has a
2-year-old son with HIV, and even as she assumes she'll tell him
when she thinks he can understand it, she fears damaging his outlook
on the future. "I don't care how many drugs there are and how many
made-for-TV movies they make," York says. "We're talking about the
life and death of a child here. How could that ever be an easy