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When
Dr. Elaine
Abrams founded
the Family
Care Center
at Harlem
Hospital
Center,
one of New
York's first
clinics
for the
treatment
of children
with H.I.V.
and AIDS,
that ''treatment''
consisted
mostly of
easing their
deaths.
Through
the early
90's, 10
to 20 babies
were dying
at F.C.C.
every year;
at one point,
an H.I.V.-infected
patient
lived to
the age
of 6, and
the doctors
considered
that child
a medical
miracle.
Today --
thanks to
protease
inhibitors,
combination
therapy
and other
improvements
in the treatment
of the virus
-- the average
age of the
approximately
135 H.I.V.-infected
children
being treated
at F.C.C.
is 13 and
rising.
It's possible
to imagine
the day
when the
clinic itself
will be
obsolete.
''Over the
years,''
Abrams says,
''we've
turned from
a medical
program
with mental-health
support
to a mental-health
program
with medical
support.
It's the
last leg
of the journey.''
But that
last leg
has involved
psychological
complexities
no one could
have foreseen.
Children
born with
the virus
also aren't
born with
the knowledge
that they
carry it;
this was
a nonissue
when few
survived
infancy,
but as their
prognosis
improved,
the whole
issue of
disclosure
-- of what
they know
about their
own disease,
and who
tells them,
and when,
and how
-- began
to reveal
its intricacies.
''I used
to believe
that all
the kids
knew,''
Abrams says.
She tells
of one 14-year-old
who knew
all about
T-cell counts
and taking
meds but
had never
contemplated
being H.I.V.-positive.
''The kid
had been
taking these
drugs every
day for
three years
without
knowing,''
Abrams says.
The fact
is, they
often don't
know, and
it isn't
a simple
thing to
tell them.
Over the
last decade,
the revolution
in medical
treatment
of H.I.V.
has created
a generation
of young
people whose
unexpected
maturation
is both
a miracle
and an extraordinary
challenge.
According
to Claude
Mellins,
co-founder
and co-director
of the Special
Needs Clinic
at New York-Presbyterian/Columbia
hospital
in New York,
about 70
percent
of her young
patients
with H.I.V.
do know
their status
by the time
they're
10 or 11.
Still, from
the outside,
the idea
that any
H.I.V.-infected
child --
that other
30 percent
-- could
reach adolescence
without
knowing
he or she
has the
disease
threatens
to beggar
belief.
For starters,
the children
have usually
spent most
of their
lives taking
several
different
drugs several
times a
day, drugs
notorious
for their
foul taste
and vicious
gastrointestinal
side effects.
Many of
them have
spent time
in the hospital,
a setting
in which
the likelihood
of their
overhearing
a diagnosis
of their
own disease
by accident
is high.
How can
they not
know? How
can their
parents
justify
not telling
them? And
what happens
when a child
finds out?
The walls
of A.'s
living room
are covered
with framed
photographs
of her six
children
and stepchildren
-- most
of them
school portraits
in the familiar
three-quarter
pose, forming
a kind of
time-lapse
of their
youth --
and to look
at them,
you would
never know
which child
was the
chronically
ill one.
But then
to look
at A., an
attractive
young mother,
soft-spoken
and articulate,
you wouldn't
know that
she has
been, like
the second
of her four
boys, H.I.V.-positive
for more
than a decade.
It is so
easy, in
fact, to
conceal
her son's
H.I.V. status
that she
has successfully
kept it
a secret
from nearly
everyone:
her friends
and neighbors,
her other
children
and even,
amazing
as it seems,
from the
boy himself.
Infected
in the womb,
he has taken
medication
nearly every
day of his
life and
has never
really been
told why.
She points
out his
picture
on the paneled
wall. He
is 11.
''I have
not yet
discussed
it with
him,'' she
says. ''He's
sweet, but
he's still
a little
immature,
and I don't
think he's
ready to
handle it.
His siblings
either.
I don't
think that
they would
understand
right now.
I'm planning
on trying
to disclose
to him at
the beginning
of next
school year.
He's very
popular
in school.
It'll be
hard for
him if people
find out.
Not only
do I have
to be careful
of maybe
he might
blame me
for his
illness,
but people
might treat
him bad
because
he has it.''
A. lives
with her
husband
and children
in a dark,
toy-strewn,
spacious
apartment
in the South
Bronx. Her
own health
is very
good, though
she was
asleep when
I arrived
-- the aftermath
of one of
the migraine
headaches
that have
begun plaguing
her lately,
whether
from her
medication
or from
some other,
perhaps
stress-related
cause, she
isn't sure.
''We've
done very
well for
the last
11 years
hiding it,''
she told
me. The
''we'' refers
to her husband,
who is H.I.V.-positive
as well.
''It's difficult,
because
I'm running
back and
forth to
the hospital.
I'm always
in an appointment;
my husband
is in an
appointment.
We tell
the other
kids when
my son is
taking his
meds to
leave the
room, because
they ask
questions.
Why does
he have
to take
medicine?
Why does
he always
get sick?
Why does
he see Dr.
Champion
and I don't?''
Susan Champion
is a pediatrician
at the Family
Care Center,
which provides
complete
medical
and mental-health
treatment
for children
with H.I.V.
and their
families.
They do
everything
for these
children
except the
one thing
that by
law they
are barred
from doing
without
the parents'
explicit
consent,
and that
is to disclose
to children
the reason
they are
at the Family
Care Center
in the first
place. When
A.'s son
asks questions
-- which
he does
-- she tells
him he has
a blood
disease,
which, as
she points
out, is
not untrue.
''I'm terrified
of people
knowing,''
she says,
''very terrified
even for
myself.
No one knows.
My brother
is the only
one in my
family that
knows. Not
my dad,
not my sisters,
my stepmom,
no one.''
What is
she most
worried
about? ''The
simple things,
you know.
If it's
not the
sympathy,
it's the
pushing
away. It's
either one
or the other.
You either
get the
sympathy,
or you get
the boot.
No one wants
to be bothered.
No one wants
to touch
you -- don't
come over
here, don't
get nowhere
near her,
you know.
And that's
what I'm
afraid of
for my boy
with the
other kids,
because
kids are
cruel. And
there are
a lot of
parents
that are
cruel too.''
There are
two issues
here, of
course:
1) what's
best for
the long-term
physical
and mental
health of
A.'s son
as he grows
older and
inevitably
more aware
that an
enormous
secret has
been kept
from him;
and 2) the
prospect
of a happy,
charismatic,
handsome
young boy
approaching
the age
of sexual
activity
who has
H.I.V. and
doesn't
know it.
And then
there is
a separate
and, within
some families,
greater
concern:
that the
child, once
in possession
of the family
secret,
will not
prove adept
at keeping
it from
those outside
the family.
One study
found that
45 percent
of children,
upon being
told they
had H.I.V.,
were also
told that
they were
not allowed
to share
that information
with anyone
else, period.
Charging
them with
the responsibility
of keeping
such a secret
ratchets
up the stress
level for
everyone
involved.
''To tell
you the
truth, I'm
not ready,''
A. says.
''I think
it's more
me than
him. Maybe
he can understand.
You know,
the doctors
are like,
'O.K., are
you talking
to him about
it?' Once
in a while
we discuss
things.
I'm not
so much
scared that
he'll blame
me, because
if he does,
it is my
fault, because
I should
have been
tested.
It was only
because
I had unprotected
sex. It's
not like
I was shooting
up drugs
and things
like that.
But at the
time, we
weren't
very educated
about what
could happen.
I'm afraid
that he
won't feel
like he's
the same
as everybody
else. He
thinks he's
a little
teenager.
He's into
the music,
the TV,
into girls
and wrestling.
And I think
if I tell
him, he
won't feel
the same.
I think
he'll be
a different
person.
And I don't
want him
to change.
I want him
to always
be himself.''
At the end
of our conversation,
footsteps
came crashing
down the
hallway,
and her
son walked
into the
living room.
We were
introduced,
and he nodded
shyly. He
is poised
between
impish and
handsome.
It was not
so very
long ago
that to
meet such
an 11-year-old
boy would
have been
unimaginable.
By 1990,
as many
as 2,000
children
nationwide
were being
born perinatally
infected
-- that
is, infected
in the womb
-- with
H.I.V. Few
were expected
to live
more than
two or three
years. (Recent
news reports
have raised
the possibility
that in
the 1980's
and into
the early
90's, AIDS
drugs were
tested on
foster children
in New York
City, and
elsewhere,
without
adequate
precautions.)
By 1994,
a major
study was
under way
to determine
whether
the relatively
new AIDS
drug AZT,
if administered
to H.I.V.-positive
pregnant
mothers,
would influence
in any way
the transmission
rate of
the virus
to their
unborn children;
the results
were so
immediate
and decisive
that the
tests were
unblinded,
and AZT
therapy
was made
generally
available.
With the
new treatment,
the so-called
vertical
transmission
rate was
reduced
from roughly
25 percent
to 8 percent.
Since then,
a host of
factors
-- including
the adoption
of recommendations
against
breast-feeding
-- have
combined
to all but
eliminate
vertical
H.I.V. transmission.
Women who
have been
H.I.V.-positive
for a decade
or more
can, with
early and
consistent
drug treatment,
bear children
with very
little risk
of transmitting
the disease.
The transmission
rate is
now 1 percent
to 2 percent,
which translates
to about
200 H.I.V.-infected
infants
born each
year nationwide.
In New York
City in
2003, the
total number
of perinatal
H.I.V. transmissions
was five.
Harlem Hospital
has had
just two
in the last
four years.
And the
advances
in the medical
treatment
of H.I.V.
wrought
a similar
change in
the lives
of the perinatally
infected
themselves.
By 1999,
the life
span for
children
infected
in the womb
ranged from
8.6 to 13
years; today
that life
span --
provided
the children
stay on
their drug
regimens
-- is open-ended,
and their
illness
has turned
strikingly
from terminal
to chronic.
Though this
can be viewed
only as
a blessing,
it is simultaneously
true that
these children
tended to
be raised
with little
thought
of preparing
them for
an independent
adulthood
that seemed
not just
unlikely
but also
out of the
question.
''I spoiled
her rotten,
because
I thought
she was
going to
die,'' one
adoptive
mother told
me. ''How
could you
not?'' A
significant
part of
''spoiling''
them, in
most cases,
was withholding
the information
that they
had H.I.V.
at all.
Now, as
these children
grow older
and savvier,
a small
culture
of medical
professionals
-- men and
(mostly)
women who
have been
on the front
lines of
this initially
hopeless
battle from
the beginning
-- struggle
to influence
what their
patients
are told
about their
conditions,
and when,
and by whom,
without
further
damaging
a family
framework
that's often
extremely
fragile
to begin
with. Their
success
rate is
astonishingly
high. At
one end
of the spectrum
are young
adults who
have developed
a precocious
sense of
self-reliance
and a fearlessness
in the face
of others'
prejudices;
at the other
end is a
case like
A.'s son
-- a child
at the cusp
of sexual
activity,
ignorant
of carrying
an infectious
and potentially
lethal disease,
surrounded
by adults
who either
can't make
themselves
tell him
or are forbidden
to do so
by law.
K
is a 20-year-old
Bronx woman
who has
been positive
since birth
but didn't
find out
until she
was 13 --
very shortly,
by her own
account,
before she
became sexually
active.
In her case,
it wasn't
simply a
question
of her mother's
not being
able to
bring herself
to tell
her: her
mother,
having learned
of her own
positive
status three
years earlier,
couldn't
bring herself
to have
K. tested
at all,
so great
was her
fear of
what the
test result
would be.
K. learned
the truth
when visiting
a doctor
to try to
discover
why she
had stopped
growing.
(In the
early years
of the epidemic,
H.I.V.-positive
children
were often
marked by
significantly
retarded
physical
development;
with improved
medication,
that's much
less the
case.) ''It
was one
big snowball
for me,''
she says.
''I found
out I'd
stopped
growing,
I found
out I was
positive,
that my
mother was
positive,
that my
father gave
it to my
mother,
all at the
same time.
It was like,
my first
week in
high school.
As soon
as they
told us,
this stream
of tears
just came.
But it wasn't
like a big
sob story.
It just
happened.
We got over
it, and
then we
went shopping.
I guess
as the years
go on, I
still process
it, but
at that
moment it
was like,
if I ignore
it, then
it's not
gonna bother
me.''
This is
an attitude,
as she recognizes,
that she
picked up
from her
mother.
''She's
a very secretive
person,''
K. says,
shrugging.
''She doesn't
tell us
things.
My grandmother
too. She
runs a whole
AIDS section
of her church,
but she
won't tell
people that
I'm positive,
or that
her daughter's
positive,
or that
her son''
-- K.'s
uncle --
''is positive.
I think
secretly
she's kind
of ashamed.
She wants
to appear
as this
good Samaritan,
where she's
helping
out strangers,
whereas
she's really
doing it
because
someone
in her own
life is
affected
by it. She
doesn't
want that
dirty little
secret,
I guess,
in her life.''
Some families
decide that
that burden
of secrecy
is so great,
and so unjust,
that the
best response
is to disclose
to everyone,
to turn
their plight
into a means
of educating
their own
community
or society
at large.
Many parents
also expect,
not unreasonably,
that such
proactive
honesty
will make
their children
feel better
about themselves.
But studies
show that
such broadly
public disclosure
-- appearing
on TV, going
on speaking
tours --
actually
turns out,
in terms
of the children's
self-esteem,
to be a
mixed bag.
Not to mention
that the
community
at large
sometimes
resists
being educated.
Most everyone
old enough
to remember
the worst
days of
the AIDS
crisis remembers
Act Up,
the confrontational
activist
group instrumental
in raising
AIDS awareness
throughout
the 80's
and 90's;
less well
remembered
is that
there was
an offshoot
of Act Up
devoted
to the cause
of H.I.V.-positive
children,
called the
Just Kids
Foundation.
E., for
example,
was eager
to do something
to help
in the fight
against
the epidemic;
she decided
to become
a foster
parent to
a child
with the
disease,
knowing
full well
that that
child's
life would
probably
be a short
and difficult
one. In
fact, doctors
gave the
infant girl
she took
responsibility
for and
later adopted,
who was
born not
only H.I.V.-infected
but also
addicted
to crack
cocaine,
two to three
years to
live. E.
is enough
of an old-time
lefty herself
to quote
Eldridge
Cleaver
in conversation,
but when
she went
to those
Just Kids
meetings,
she sometimes
found she
didn't agree
with what
she heard.
(The initials
throughout
this article
are derived
from people's
actual names.
In this
case, the
initial
is not;
it was chosen
to further
protect
E.'s daughter's
privacy.)
''It was
very similar,
very radical,''
she says.
''Heavy
pressure
to disclose
to the children
at a very
early age,
to start
certain
medications
at a very
early age.''
But broader
disclosure
was frowned
on. ''It
was 'don't
ask, don't
tell.' If
the teachers
at the child's
school don't
know enough
to wear
rubber gloves
if a kid
bleeds,
then that's
too bad
for them.
But I didn't
feel that
was fair
to the teacher.
I felt it
was my responsibility,
and if there
were consequences,
then I would
take those
consequences.''
The radical
approach
to disclosure
-- that
the child
must know
everything,
because
there is
nothing
to be ashamed
of, and
that no
one else
has the
right to
know anything,
because
it's none
of their
business
-- was a
defensible
one, but
also one
containing
a seeming
contradiction
whose subtleties
were bound
to be lost
on the children
themselves.
E.'s daughter's
own experience
wound up
bearing
out that
very contradiction.
When she
started
asking questions,
around age
8, E. (who
had by then
adopted
her) told
her the
truth with
the help
of a children's
book written
specifically
for children
with H.I.V.
As children's
books tend
to do, it
represented
a difficult
experience
in an honest
but also
optimistic
light, its
primary
goal being
to strengthen
the reader's
self-esteem.
It went
well. It
went so
well, in
fact, that
when the
girl returned
to school,
she decided
to tell
her news
to her friends.
''Her teacher
was beside
herself,''
E. says.
'''What
are the
parents
going to
do?' And
this was
a very progressive
school.
There were
all these
conferences.
They hushed
it over.
They told
the girl
to keep
it to herself.''
To make
matters
worse, one
parent who
expressed
alarm about
this one-girl
disclosure
campaign
was, according
to E., one
of the girl's
own doctors.
Some kids,
like E.'s
daughter,
enter the
foster-care
system virtually
from the
moment they're
born; for
others,
foster care
is a later
stage in
a childhood
marked by
progressive
loss. V.,
who works
in a Manhattan
bakery,
lost his
mother to
AIDS when
he was 7,
and in the
years when
they were
together,
they were
both sick
all the
time. ''The
hospital
was like
my second
home,''
he says
-- in many
ways a more
stable home
than his
primary
one. ''All
the nurses
knew me.
They took
care of
me like
I was their
son. It
wasn't scary
at all.
Now it's
scary, because
I know what
the situation
is. If I'm
in there
now, I want
to try to
get out
as fast
as possible.''
V. went
into the
foster-care
system after
his mother's
death. Eventually
he found
a stable
home, and
when he
was 13 that
family adopted
him. ''It
was O.K.,''
he says.
''I mean,
it was family,
but it can
never happen
like family
family.
I will never
know what
family is.''
As he grew
older and
more independent,
things became
more argumentative
at home,
until it
reached
the point
where he
moved out
and went
voluntarily
into a group
home for
H.I.V.-positive
teenagers;
at 18 he
moved into
his own
apartment
in Washington
Heights.
''I grew
up faster
than I was
supposed
to,'' he
says. ''Everybody,
they look
at me, they're
like, No
way you're
20.'' He
dreams of
opening
his own
bakery,
maybe in
New York
or Miami.
He dates,
but right
now he is
disconcerted
to be facing
the end
of the most
solid, long-term
relationship
in his life,
and that's
with his
pediatrician.
''I've know
him since
I was 18
months,''
he says,
''longer
than I've
known myself.''
As for many
in his generation,
the necessary
transition
to an adult
doctor is
psychologically
fraught;
patients
like V.
haven't
had many
stable adults
in their
lives, and
so it's
not so easy
to give
one up.
''I don't
trust a
lot of people,''
he says.
''That's
the problem
I have now.
Like, I
could trust
you. But
I don't
trust you.
You know
what I mean?''
It's a transition
a lot of
H.I.V.-positive
young people
find traumatic.
Their doctors
are quite
often the
most long-term,
if not the
only, responsible
and reliable
adults in
their lives.
''There's
this one
patient
of mine,
a young
woman,''
says Dr.
Stephen
Arpadi,
who started
one of New
York's first
family AIDS
clinics
at St. Luke's-Roosevelt
Hospital.
''Her parents
both died
by the time
she was
10. Her
older brother
was really
incapable
of taking
care of
her. She
had her
own adolescent
issues about
taking medication,
and she
became quite
sick and
at some
point lost
her ability
to walk.
Now she's
on the other
side of
adolescence,
and she's
actually
a fairly
hopeful
character
right now.
But whenever
I'm with
her, she
never fails
to say to
whomever
we come
across:
'That's
Dr. Arpadi.
He knew
my mother.
He knew
my father.'''
It's the
families
most in
need of
the mental-health
services
that a place
like F.C.C.
provides
that prove
the most
difficult
to engage.
It can take
months,
or years,
and sometimes
it doesn't
work out.
''This is
not like
cancer,''
says Sheila
Ryan, program
director
of the Special
Needs Clinic
at Columbia-Presbyterian.
''These
families
are not
a cross-section
of the population.
These issues
would be
agonizing
for any
family to
deal with,
but the
families
that are
likely to
be dealing
with H.I.V.
are more
likely to
have problems
with substance
abuse and
mental illness.
These are
poor families,
and even
within the
poor community
more likely
to be fragile
than others
on the same
block.''
It was partly
in an effort
to shore
up the fragility
of these
families
that a movement
to safeguard
their privacy
grew up
in the wake
of the AZT
trials in
the mid-90's.
With such
a remarkably
effective
treatment
newly available,
the issue
became whether
H.I.V. testing
for pregnant
mothers
should be
mandatory,
for the
sake of
the health
of their
children.
But this
was at the
height of
the epidemic
and the
panic it
engendered;
the specter
of discrimination
against
the mothers
themselves
-- including
the possibility
of their
being judged
unfit on
the basis
of those
tests and
having their
children
pre-emptively
taken away
from them
-- kept
this initiative
from becoming
law. H.I.V.-confidentiality
statutes
are state-specific;
today in
New York,
testing
newborns
for H.I.V.
is mandatory,
but testing
their mothers
is not.
Such sweeping
policies,
whether
they come
from a group
like Act
Up or from
the government
it opposes,
will always
have unintended
consequences.
Q., a 47-year-old
woman who
lives in
the Bronx
-- active,
physically
fit, a self-professed
vitamin
devotee
-- is the
mother of
five children.
The fourth,
a daughter,
was born
at Harlem
Hospital
Center in
1993, and
unlike her
siblings,
she was
sick from
Day 1. She
had recurring
yeast and
sinus infections
and difficulty
walking
and crawling,
and though
she could
clearly
hear and
understand
others,
she never
tried to
speak. Q.
hadn't returned
to Harlem
Hospital
Center since
the birth,
going instead
to a variety
of hospitals
and clinics
closer to
her home,
where doctors
dispensed
antibiotics
to treat
the infections,
which partly
cleared
up for a
day or two
and then
came right
back. She
was sure
there was
something
wrong with
her daughter's
immune system.
She even
asked one
doctor to
test her
daughter
for H.I.V.,
and he wouldn't,
saying that
the test
was too
painful
to perform
on a clearly
healthy
child and
accusing
Q. of something
he called
parent paranoia.
Two months
later, Q.
took a vacation
to visit
an old friend
in North
Carolina.
Q.'s daughter
was sick
again. Q.
took her
to Duke
University
Medical
Center,
without
an appointment,
and after
sitting
there for
a while,
she rev.finally
stopped
a doctor
in the hallway.
''I said,
'I think
she's H.I.V.-positive,'''
Q. remembers.
''The doctor
said, 'What
do you want
me to do?'
I said,
'I want
you to test
her for
everything.'
That was
on a Monday.
She said,
'Come back
in on Thursday
and we'll
give you
the answer.'''
The answer
was that
the girl
was indeed
H.I.V.-positive.
Q., having
rev.finally
found a
doctor capable
of listening
to her,
now had
to explain
that she
was only
there on
vacation.
Could the
doctor recommend
a good facility
for the
treatment
of pediatric
H.I.V. back
in New York?
''Do you
know,''
the doctor
asked her,
''where
Harlem Hospital
is?'' Thus,
Q. returned
to the hospital
where her
daughter
was born.
Dr. Abrams
and her
colleagues
immediately
started
aggressive
drug therapy
for the
child, who
not only
didn't die
but thrived:
now 12,
she's an
honors student
who also
excels at
tae kwon
do and basketball.
The push
for openness
with children
about their
own condition
is far more
likely to
come from
the doctors
themselves
and toward
parents
or caregivers
whose reluctance
or fear
or denial
grows more
entrenched
with the
years. The
doctors'
experience
has tended
to bear
out what
common sense
might suggest
-- that
the outlook
for the
child's
emotional
well-being
in the wake
of disclosure
is greatly
improved
if the bad
news has
come from
his or her
own family
members,
rather than
despite
them. ''Trust
is most
important,''
says Dr.
Lori Wiener,
coordinator
of the Pediatric
H.I.V. Psychosocial
Support
and Research
Program
at the National
Institutes
of Health
in Bethesda,
Md. ''It's
very hard
to swim
back up
that river.
You don't
want them
to be saying
to you,
'What else
have you
lied to
me about?'''
At the same
time, the
doctors
worry that
putting
too much
pressure
on the parents
to disclose
might lead
them, in
an effort
to escape
that pressure,
to stop
bringing
the children
in for regular
treatment
at all.
''The typical
response
is, 'He
hasn't asked,
so I haven't
told him,'''
Abrams says.
''But ultimately
most families
do what's
best for
their child.
Just not
necessarily
on my time
line.''
Part of
the tendency
toward silence
has its
roots in
the bitter
experience
of the families
themselves.
As one early
research
study dryly
phrased
it: ''The
overwhelming
majority
of pediatric
H.I.V. cases
occurs in
urban minority
families
that have
experienced
poverty,
early or
violent
family deaths,
racial discrimination,
lack of
basic services,
drug addiction
and unstable
family configurations.
Strategies
for coping
with the
pervasive
losses these
families
have encountered
on all fronts
generally
do not include
full and
open discussion.''
But in the
end, most
of the reasons
that parents
have such
a hard time
delivering
such monumentally
bad news
to their
own children
transcend
any social
or economic
circumstances.
Parents
often experience
their reluctance
to tell
the truth
as protective.
There's
the constant
fear that
it's too
soon, too
early, that
the child
is not ready
to make
sense of
it, as if
there were
any sense
to be made
of such
news. ''They'll
say, 'Look
at her,'''
Wiener says.
'''She's
out there
playing.
She's happy.
Why would
I want to
burden her
with this
information
that will
change her
life forever?'
Or, 'She's
too young
to understand
anyway,
so what
difference
will it
make except
to add something
that's really
stressful
for her?'''
Many parents
also fear
that the
news itself
will make
the child's
condition
worse by
adversely
affecting
his or her
will to
live. It's
worth noting
that while
the disease
itself may
be relatively
new, this
sort of
secrecy
-- even
on the professional
level --
is not:
as recently
as the 1960's,
it was not
unusual
for cancer
patients
to die without
the word
''cancer''
once being
uttered
in their
hearing,
not even
by their
doctors.
Avoiding
the subject
was presumed
to be merciful,
whereas
honesty
was simply
hope-killing.
The subject
is even
more charged
when the
H.I.V.-positive
child lives
with a biological
parent.
Such parents
have good
reason to
fear, at
least initially,
anger and
rejection
from their
own children;
they may
also dread
the prospect
that the
conversation
will have
to include
a disclosure
of their
own H.I.V.
status,
as well
as the behavior
that led
to it. ''It's
a web,''
Wiener says.
''You can't
just go
to the child
and say,
O.K., this
is what
you have.
It means
disclosing
other family
events.''
Sometimes
the child
himself
will force
the issue,
even if
unknowingly.
Dr. Warren
Ng, chief
psychiatrist
and co-director
at Columbia-Presbyterian's
Special
Needs Clinic,
remembers
a patient
whose ignorance
of his own
condition
suddenly
became an
issue when
he started
talking
about his
desire to
have sex
on his 15th
birthday,
which was
quickly
approaching.
In that
case, the
clinic not
only called
in the boy's
parents
but also
put them
through
family counseling
in order
to find
for them,
Ng says,
''a script
they were
comfortable
with.''
But the
greatest
inhibitor
-- which
the child's
good health
and outwardly
normal childhood
only aggravates
-- is guilt.
When Q.
faced her
own diagnosis
shortly
after learning
her baby
daughter's,
her eldest
child was
16, old
enough to
handle the
information
in a mature
way; still,
Q. couldn't
bring herself
to tell
that daughter
for two
more years.
''They knew
their sister
took meds,''
she says
of her other
children.
''And they
knew I took
meds. They
just didn't
know why.
They knew
it was important.
They'd say,
'Mom, did
you remember
to take
your meds?'
But they
didn't know
what it
was for.''
The doctors
at the Family
Care Center
urged her
to start
discussing
it directly
with her
family.
''But I'm
not a person
who's easily
swayed,''
Q. says.
''It wasn't
that I wasn't
ready to
discuss
it with
my child
but that
I wasn't
ready to
deal with
the fact
that she
might feel
ashamed
of me over
it, or angry
with me.
I wasn't
willing
to hear
her say:
'Ma, how
could you
have done
that? What
kind of
life was
you living?'''
Sometimes
the disclosure
conversation
itself,
when it
rev.finally
occurs,
can become
another
variant
of denial:
parents
rush through
it in the
vain hope
that having
talked about
it once,
it will
thus be
dismissed,
and they
won't need
to talk
about it
anymore.
What they
learn instead
is that
children
don't process
information
-- especially
difficult
information
-- in the
same way
adults do.
The mantra
of the doctors
and social
workers
is that
disclosure
is not an
event but
a process;
usually
the conversation
needs to
take place
several
times before
its reality
sets in
for good.
Mellins
tells the
admittedly
extreme
story of
a graduate
assistant
in a research
study who
went in
to interview
a child
in the Family
Care Center
for a study
on some
element
of the psychological
fallout
of his ailment.
She began
by asking
him what
he could
recall about
his reaction
to the news
that he
had H.I.V.
The boy
stared at
her. ''I
have H.I.V.?''
he said.
In fact,
this child
had been
told of
the diagnosis
not just
once but
several
times; the
doctors
called in
the people
who were
caring for
him and
went over
everything
again. How
do children
react to
the news
when it
sinks in?
Surprisingly,
perhaps,
they tend
not to ask
about death
right away.
''The issues
about death
come out
in other
ways,''
Mellins
says. ''They
try to make
certain
things happen
quickly,
like wanting
to have
a baby or
get married.
At age 14
or 15, they
want these
things to
happen.
And if you
press, you
start to
learn that
it's because
they're
afraid they
won't have
a regular
life span.''
''The two
issues they
keep coming
back to,''
Sheila Ryan
of Columbia-Presbyterian
says, ''are
the permanence
of the virus
-- the idea
that there's
nothing
you can
do to get
rid of it
-- and what
kind of
impact it
will have
on their
capacity
to have
children,
which is
partly a
question
about the
ways in
which they
might be
impaired
or maimed
or less
than others.''
''Sometimes
kids find
ways of
protecting
themselves
from the
information,''
Ryan adds.
''One girl
who was
in here,
at the time
we rev.finally
said the
word H.I.V.,
she said,
'But I know
I don't
have AIDS.'
I said,
'How'd you
figure that
out?' And
she said,
'Because
if you have
AIDS, you're
skinny and
living in
Africa,
so I know
I don't
have it.'
Or another
girl who
was 15 --
her mother
told her
the week
before she
came in
here for
the first
time, and
her response
to that
was simply
that her
mother had
lied to
her.'' In
the end,
it was Q.'s
daughter
who forced
the conversation
with her
mother.
Like some
who live
with H.I.V.,
she takes
the medicine
via a surgically
implanted
feeding
tube; after
asking for
years, and
being put
off with
answers
like, ''Because
I'm your
mother and
I say so,''
she demanded
to know
why she
had to take
all this
medicine
daily that
no one else
she knew
in her family,
apart from
her mother,
ever had
to take.
They had
the conversation,
and now
the child
herself
is part
of the stressful
balancing
act -- on
the one
hand, H.I.V.
is nothing
to be ashamed
of; on the
other hand,
don't go
telling
your friends
about it
because
it's none
of their
business.
Does Q.
worry that
as her daughter
gets older
and more
independent,
she'll start
making those
decisions
-- whom
to tell
about the
family secret,
whom not
to tell
-- on her
own? ''Right
now, it's
nothing
she would
share,''
she says.
''She's
at the age
when children
don't want
to be different
from their
friends.
She would
not want
to stand
out. She
would not
say anything
about H.I.V.,
or the people
who have
it, that
would make
her friends
turn around
and say,
'How would
you know?'''
There was
no one moment
when all
of these
parents,
who once
thought
their time
with their
children
would be
so limited,
were told
that the
old prognoses
had been
thrown out
the window;
the necessary
emotional
adjustments
had to be
made gradually,
not to mention
improvisationally.
P. is a
former New
York City
employee
who went
on permanent
disability
after developing
a work-related
lung ailment.
She became
a foster
parent --
''I didn't
even know
you got
paid for
doing it,''
she says.
''I just
thought
that if
it was something
you could
manage to
do, you
did it''
-- and over
the last
15 years,
some 60
children
have lived
in the Bronx
apartment
she shares
with her
sister.
(In fact,
foster parents
of H.I.V.-positive
children
under the
age of 5
may be paid
triple the
usual rate.)
Some stay
for a short
time, some
for a long
time, and
she has
legally
adopted
two of them,
including
a boy, now
12 and positive
since birth.
He went
into the
foster-care
system in
1994 when
his aunt,
with whom
he was living,
learned
that the
boy's mother
had H.I.V.
and announced
that she
no longer
wanted the
16-month-old
baby in
her house.
The aunt
never even
had him
tested.
That fell
to P., and
when the
results
came back
positive,
the doctors
at Harlem
Hospital
told her
that the
boy might
not live
to the age
of 4. ''I
used to
ask him,''
P. remembers,
'''Did you
have a good
day today?'
Every day
had to be
a good day.
Because
I was really
afraid he
might not
make it.''
She still
remembers
the party
they gave
when, against
expectations,
he turned
4 after
all. He
turned 5,
and 6, and
then one
day -- still
unaware
of his own
condition,
though he
would complain
about the
AZT he had
to take
as often
as every
12 hours
-- he had
a surprising
request.
''He asked
for a brother,''
P. says.
''He said,
'I need
someone
to play
with.'''
She thought
over his
request,
and then
she went
to the foster-care
agency with
an unusual
request
of her own.
She wanted
to adopt
another
child, with
three conditions:
it had to
be a boy,
he had to
be younger
and he had
to be H.I.V.-positive.
''They really
thought
I was crazy,''
she says.
''But if,
God forbid,
anything
ever happened
to my older
boy, I didn't
want him
to be able
to look
at me and
say: 'You
knew all
along. That's
why you
let me have
this brother,
so that
you could
have a healthy
child, so
you could
replace
me with
a normal
person.'''
His little
brother
is now 6
and has
not yet
been told
he's positive.
His older
brother
helps encourage
him to stay
on his medicine.
It's four
years now
since he
learned
of his own
H.I.V. status.
He had his
suspicions,
in part
because
of the children's
books about
H.I.V. and
AIDS that
P. made
sure were
on the bookshelf
in his bedroom.
rev.finally
the doctors
convinced
her that
her son
needed to
hear, as
she says,
''the letters
that go
with the
problem.''
She tells
the story
of how she
then took
him to a
restaurant
for lunch,
just before
one of his
scheduled
appointments
at the hospital.
She let
him pick
out whatever
he wanted;
when the
waitress
came and
took their
order, she
said, ''There's
something
I'd like
to talk
to you about.''
''It can
wait,''
he said.
The appetizers
came, and
then the
main courses,
and she
said she
really needed
to talk
to him.
''I know
you do,''
he said.
''Don't
ruin the
food.''
They finished
their lunch,
paid the
check and
walked all
the way
to the hospital
before she
could make
herself
go through
with it.
''Come here,''
she said.
''Don't,''
he replied.
But she
did. And
when it
was over,
she was
in tears,
and he seemed
fairly calm.
''Is that
all it is?''
he said.
''I thought
you were
going to
tell me
I had asthma,
like you.''
Seeing her
struggle
for breath,
that was
what scared
him. He
sometimes
asks about
his biological
mother;
P. is legally
forbidden
to give
him any
information
that might
help him
contact
her until
he turns
18. But
the fact
is, not
only does
she know
the identity
of her son's
biological
mother;
she saw
her once
in a while.
She seemed
healthy
and has
other children.
One Sunday,
P. recalls,
she and
her son
met one
of these
children.
They ran
into his
aunt --
the same
one who
put him
into foster
care as
a baby because
she suspected
he might
be ill --
with another
of her nephews,
his half-brother.
To P.'s
son, both
of these
people were
strangers.
''Is that
who I think
it is?''
the aunt
said pleasantly.
''Well,
of course
it is,''
P. said
-- and,
not knowing
what else
to do, she
introduced
the children
to each
other. Her
son, who
lives in
a home where
a premium
is placed
on etiquette,
said, ''Pleased
to meet
you'' to
the other
child and
put out
his hand.
''Don't
touch him,''
the boys'
aunt said.
Those on
the leading
edge of
this unexpected
generation
are just
now moving
into the
adult phase
of their
suddenly
open-ended
lives; after
childhoods
marked by
secrecy
and fatalism
and prejudice
and loss,
it seems
too much
to expect
that they
should figure
out how
to become
responsible
adults.
But it happens
every day.
Ben Banks,
a 26-year-old
who lives
in Virginia,
had a rare
form of
cancer in
infancy;
on the day
of the physical
exam that
was supposed
to mark
his 10-year
freedom
from that
cancer,
when he
was 12,
it was discovered
that he
had contracted
H.I.V. from
a blood
transfusion.
(The blood
supply began
to be screened
in 1985.)
He came
home from
school,
walked up
the stairs
and found
his mother
sitting
on the bed
sobbing,
having just
hung up
the phone.
''That was
the doctor,''
she said.
''You're
H.I.V.-positive.''
No elaborately
planned,
properly
tempered
disclosure
conversation
for him.
Still, this
was in 1991-
six months
before Magic
Johnson's
public disclosure
of his diagnosis
-- and he
had to be
careful,
much more
careful
than those
who would
follow in
his footsteps,
about what
he said
and to whom.
His school
gave him
special
permission
not to go
to the nurse
-- to take
his own
medication
in private,
in the bathroom
before lunch
-- because
of the panic
they feared
would ensue
if anyone
recognized
the name
of the drug
he was taking.
On one particularly
harrowing
day, he
sat in health
class and
watched
the TV movie
''The Ryan
White Story''
while his
classmates
joked cruelly
all around
him.
But Banks,
having already
survived
cancer,
was a remarkably
resourceful
teenager.
He told
his best
friend,
and then
a few other
friends,
and then
a group
of his classmates
at James
Madison
University,
and he now
serves as
a spokesman
for the
Elizabeth
Glaser Pediatric
AIDS Foundation.
In 2003,
he married.
As for the
turning
point in
his own
understanding
of his disease
-- from
death sentence
to manageable
illness
-- it may
have come
when he
was 17 and
applied
to the Make-a-Wish
Foundation,
which grants
the wishes
of extremely
ill children.
His application
was disqualified.
Stung, he
called up
his doctor.
''Ben,''
the doctor
said, ''why
don't you
give that
wish to
a child
who really
needs it.
You're not
going anywhere.''
Their continued
good health,
indeed their
survival,
depends
on their
continued
adherence
to the same
strict drug
regimen
that has
kept them
alive thus
far. Keep
taking your
medicine:
another
simple idea
that in
the lives
of these
young people
turns out
to be burdened
with psychological
complexities
-- this
despite
the fact
that even
a few missed
doses can
allow the
virus to
develop
a resistance
to a given
drug, permanently
compromising
or nullifying
that course
of treatment.
What, apart
from the
desire for
a respite
from the
sometimes
grievous
side effects,
would induce
someone
to stop
taking lifesaving
medication?
Primarily
stress and
depression
-- circumstances
to which
any teenager
might be
considered
at risk,
but to which
an adolescent
concealing
a stigmatizing
condition
is especially
prone. ''There
is definitely
a relationship
between
adherence
and depression,''
Wiener says.
''There's
a tremendous
amount of
stress associated
with lying,
with living
a life of
secrecy.''
Going off
meds can
also be
an adolescent's
expression
of the desire
to hold
the reins
of his or
her own
life for
a change,
even unto
self-destruction,
broadly
analogous
to an anorexic's
refusal
to eat.
But others
simply overlook
their own
welfare,
often because
even as
children,
their first
responsibility
was the
welfare
of others.
Siomara
Cruz is
an effervescent
21-year-old,
the fourth
of six children;
she and
her two
younger
siblings
were born
with H.I.V.
Those siblings
each died
at the age
of 5; the
eldest child
in the family,
eight years
Cruz's senior,
was so unstrung
by the deaths
that he
left home.
Their mother
passed away
when Cruz
was 11.
She and
her older
sister moved
in with
their grandmother,
but that
didn't last
long; she
has been
looking
after herself
since she
was 16.
Now she
works at
an office-supply
store in
Manhattan;
some of
her co-workers
know her
status and
some don't.
''When you
hear people
just talking
and joking
around,
you can
get a sense
of the type
of person
they are,''
she says,
''and I
don't think
a lot of
them can
handle it,
honestly.
I don't
want to
have to
do a 'Philadelphia'
on them.''
In the summers
she serves
as a counselor
at the Joey
Dipaolo
AIDS Foundation's
camp in
upstate
New York
for kids
with H.I.V.
Counselors
frequently
have a hard
time getting
campers
-- who are
enjoying
a rare interlude
from anxiety
about their
disease
-- to take
their meds;
one way
they do
it is by
bargaining
with them,
saying:
''Look,
if you take
all your
pills, then
I'll take
one of the
purple ones
with you.
We'll do
it at the
same time.''
This, even
if the ''purple
one'' is
not a medication
prescribed
for them;
indeed,
some counselors
aren't H.I.V.-positive
at all.
Then they
stay up
all night
thrashing
and moaning
and admitting
that they
had no idea
how justified
all the
reluctance
to take
the medication
really is.
Cruz laughs
affectionately
as she recounts
this story.
Then I ask
her if she
suffers
any such
side effects
from the
medication
she's taking.
''The ones
I'm supposed
to be taking?''
she says,
laughing.
''Yeah.''
She doesn't
take them?
''I just
can't deal
with them.
They make
me feel
worse. I
just don't
want to
live my
life like
that. If
I didn't
have to
take medicine,
if I could
drink something
that would
help me
or take
like a Flintstones
vitamin,
I would.
I spoke
to my doctor.
She's like,
'Siomara,
we have
to talk.'
It's like
seven pills
I'm supposed
to take.
If I take
them in
the morning,
then when
I get to
work I'm
just ready
to hit the
floor. But
then I try
at night,
and I can't
sleep because
I'm so sick.
I live with
my boyfriend,
and when
I'm sick
like that,
there's
nothing
he can do.
He feels
so helpless.
I can't
put him
through
that.''
However
understandable
the desire
to deny,
if only
for a little
while, the
burden of
their illness,
neglecting
to take
meds consistently
is about
the most
unwise thing
H.I.V.-positive
young people
can do.
There's
the risk
of undermining
their own
course of
treatment.
And as if
that weren't
enough,
they could
develop
(and potentially
could transmit)
a strain
of the virus
that has
built up
all sorts
of resistances
to existing
medication.
As Mellins
says, ''How
do you instill
within kids
a healthy
sense of
sexuality
and at the
same time
a sense
of fear?''
Thus, the
doctors
say, the
next frontier
in the lives
of this
generation
is ''peer
disclosure''
-- the tricky
process
of telling
friends
and especially
potential
sexual partners
about their
status.
The mercurial
quality
of romance
in your
teens and
20's makes
the disclosure
question
especially
risky: the
boy you
think you'll
be with
forever
may be a
distant
memory in
a month
or two,
but if you
tell him
in an intimate
moment that
you're H.I.V.-positive,
the stakes
of normal
adolescent
gossip will
be exponentially
raised.
K. says
that she
would never
date anybody
in school
or anybody
who lives
in her neighborhood.
In high
school she
had a boyfriend
who found
out her
status by
accident,
through
something
he found
in her backpack,
and she
has resolved
not to let
that kind
of thing
happen again,
for everybody's
sake. ''Now
I just think
of it as
the first
thing that
needs to
be done,
before the
first physical
thing happens,''
she says.
''I just
have to
get up the
nerve to
do it. It's
like you
have to
find the
right moment,
feel the
person out.
Usually
I go down
the line
of different
diseases
-- what
would you
do if you
had this
disease,
that disease,
what would
you do if
your arm
was chopped
off? I kind
of try to
play with
it -- would
you still
be with
me if I
had no left
pinkie or
something?''
The prejudices
for which
she feels
them out
are by far
the most
significant
obstacle
between
those in
her position
and a ''normal''
love life
-- up to
and including
starting
families
of their
own. The
same safe-sex
practices
that are
drummed
into the
heads of
every teenager
and young
adult these
days are
sufficient
to keep
them and
their partners
safe as
well. And
today's
low vertical
transmission
rate means
that --
with the
same AZT
therapy,
recommendations
against
breast-feeding,
etc. --
their own
chances
of having
uninfected
children
are excellent.
The perinatally-infected
patients
in Abrams's
and Mellins's
clinics
tend, Mellins
says, to
be pretty
savvy about
such cutting-edge
insemination
techniques
as ''sperm
spinning''
designed
to help
them conceive
without
endangering
the health
of their
partners.
It should
be said,
of course,
that the
conditions
that allow
such a relatively
sunny image
of pediatric
H.I.V. as
a manageable
disease
-- one whose
transmission
from mother
to child
it is possible
to stop
-- belong
exclusively,
at the present
time, to
the developed
world. Recommendations
against
breast-feeding,
for instance:
not so simple
in impoverished
places or
where access
to clean
water can't
be taken
for granted.
Abrams says
that until
recently
children
''have not
really been
included
in the international
dialogue
around H.I.V.
care and
treatment.
In terms
of the number
of individuals
treated
in Africa,
they've
been neglected.''
And so,
even as
the Family
Care Center
she founded
at Harlem
Hospital
Center moves
blessedly
in the direction
of obsolescence,
she has
spent the
past two
years with
a team helping
to establish
family-care
pilot programs
on the F.C.C.
model in
South Africa
and elsewhere.
''So they
don't have
to start
from scratch,''
she says.
But here
in the United
States,
K., like
her peers,
has come
to terms
with the
idea that
what once
amounted
to a death
sentence
has been
lifted.
The air
of provisionality
that hung
over her
childhood
is not easily
dismissed,
but she
has turned
it into
a kind of
motivation.
''A lot
of my friends
my age that
don't have
H.I.V. are
like losers,''
she says.
''They sit
on their
rear all
day and
do nothing.
I have a
job, I go
to school,
I do everything
I need to
do, and
I think
it's because
I want to
make sure
I do it
before I
pass. It's
my goal
to just
get it all
done. She
works full
time while
going to
college
in the hope
of becoming
an architect.
No one who
meets her
would doubt
that she
has the
resources
to achieve
such a goal;
for others,
though,
with different
goals, their
H.I.V. status
-- no matter
how easily
controlled
or concealed
-- isn't
so easily
denied.
''I have
two patients,''
Ng, the
psychiatrist
at the Special
Needs Clinic,
says, ''17
and 18 years
old. One
wants to
be in the
Armed Forces,
and the
other wants
to be a
pilot. Given
their status,
they've
heard plenty
about issues
related
to their
having sexual
partners
and how
to remain
safe. But
now they're
hearing
about how
they're
not able
to do something
they want
to do with
their lives,
and once
again, H.I.V.
is there.''
''This epidemic
just marches
on,'' Arpadi
says. ''You
and I will
go to our
graves,
and there
will still
be this
terrible
epidemic.
But in this
country
we've effectively
stopped
transmission
to babies,
so now we
have this
sort of
cohort of
aging kids.
And I really
wonder how
they're
going to
make any
sense of
their lives.
Everyone
before them
died earlier
on, and
there's
no more
kids like
them behind.''
Jonathan
Dee is a
novelist
and a contributing
writer for
the magazine.
His last
article
was about
Christian
video games.

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