The Cutting Edge
Why some doctors are moving away from performing
surgery on babies of
indeterminate gender.
By Claudia Kolker
Posted Tuesday, June 8, 2004, at 4:00 PM PT
Approximately 10 times a year in Houston, at the birth
of a certain
type of baby, a special crisis team at Texas
Children's Hospital springs
into action. Assembled in 2001, the unusual team
includes a
psychologist, urologist, geneticist, endocrinologist,
and ethicist. Its mission: to
counsel parents of infants sometimes referred to as
"intersex"
babiesthat is, babies of indeterminate physical
gender.
That such a team existsand that it often counsels
deferring surgery
for infants who are otherwise healthyreflects a
radical new thinking
among doctors about gender identity and outside
efforts to shape it.
Instead of surgically "fixing" such children to make
them (visually, at
least) either male or female, a handful of U.S.
specialists now argue that
such infants should be left alone and eventually be
allowed to choose
their gender identity. The approach challenges decades
of conventional
wisdom about what to do with infants whose genitalia
don't conform to
the "norm." Until very recently, such children were
automatically altered
with surgery, often with tragic consequences.
Each year, about one in 2,000 children is born with
ambiguous-looking
genitalia. A wide range of disorders may be
responsiblegenetic defects,
hormonal abnormalities, or unexplained developmental
disruptions that
occurred in utero. Sometimes the gender anomalies
don't appear until
puberty or later when children's bodies begin to
mature, or fail to do so:
A child with, say, an androgen disorder who formed
male-looking
genitals might genetically be a girl; another child
might have the male
hormones of a boy but, because of an interruption in
the process that forms
male genitalia, may look externally just like a girl.
Many anomalies,
however, present themselves with bewildering
immediacy: tiny penises,
enlarged or "virilized" clitorises, or what appear to
be a hybrid of male
and female genitalia.
For 50 years, the medical response to such external
abnormalities has
been the same: operate quickly to make the genitals as
"normal" as
possible, then hide the child's medical history even
from parents, in the
hope of reinforcing the new gender. Convinced they
were doing the best
for their patients, doctors in the past labeled
ambiguous children boys
or girls according to the alteration that seemed most
feasible and
performed highly invasive, irreversible surgeries
accordingly. Thus a boy
with a tiny penis might be castrated, given a
rudimentary vagina, and
designated a girl. Even more commonly, in cases in
which a girl's clitoris
looked larger than the norm, her clitoris would be cut
away entirely.
Parents never heard that the interventions were
essentially
experimental, nor that they could wound the child
emotionally as well as
physically. Until a couple of decades ago, parents
might simply be told, "Your
child's genitals didn't fully form; we'll do a
procedure to fix them."
Today parents are more fully informed of the details
of their child's
condition and the consequences of any operation.
Still, the great
majority of hospitals continue to recommend and
perform "normalizing" surgery
in the first year of a child's life.
But new evidence, including a recently published study
in the New
England Journal of Medicine, is showing that the way
we acquire a gender
identity is enormously complexand that imposing
genderphysical or
socialon a child can have catastrophic results.
(Click here to read about
the study.) Of thousands of adults who were subjected
to physical
assignments and who have reported their experiences in
recent years, the
aftershocks have ranged from rage at the destruction
of sexual function, to
conflicts in school and relationships, to depression
and attempts at
suicide. Until recently, though, there's been little
science to either
support or refute these anecdotal accounts. And
because the surgical
"treatment" of children born with ambiguous genitalia
has, for the last 50
years, been shrouded in secrecy, there has been little
if any medical
follow-up.
So, what is it that determines gender identity? It's a
difficult
question. Scientists simply do not know what creates
the internal sense of
being male or female. What's increasingly clear is
that gender identity
does not necessarily follow from genes, upbringing, or
anatomy, even in
people with ordinary genitals. That growing
recognition, some doctors
say, has prompted a new humility about making those
decisions on a
child's behalf. "The hardest thing to consider is what
gender the child will
feel like," explains geneticist Chester Brown of
Baylor College of
Medicine. "And really, at such a young age, it's
impossible to assess."
The mechanics of gender identity seemed simpler a
half-century ago.
Doctors confidently altered the physiques of children
of indeterminate sex
by applying new advances in hormone synthesis and
plastic surgery.
Female genitalia are easier to craft than male, so
female was, and still
remains, the default assignment. By 1967, a Johns
Hopkins psychologist
named John Money was arguing that, in the first 18
months of life, gender
identity was just as malleable as physical gender.
Consulted in the
case of David Reimer, a baby boy who'd lost his penis
in a botched
circumcision, Money persuaded the child's parents to
raise him as a girl. The
22-month-old was castrated, surgically given a vagina,
and kept
ignorant of his original gender.
Money's work helped codify the treatment model. If
socialization could
shape the gender identity of a biological boy, Money
proposed,
assigning gender surgically was even more likely to
succeed in cases where the
child's external sex was less defined. The theory
seemed progressive,
almost utopian. Heartbreaking physical anomalies could
be fixed and then
forgotten. Gender roles, meanwhile, appeared to have
been freed from
the dictates of nature.
The problem was that Money's findings were wrong.
Brenda, as she was
called, grew up troubled, alienated, and suicidal.
(Click here to read
John Colapinto's account of Reimer's life and
suicide.) It's easy to
wonder how much Reimer's childhood traumas bled into
his adult life. Money,
meanwhile, no longer comments publicly on the Reimer
case, but his
theory and practices remain influential.
The sort of interventionist strategy encouraged by
Money creates its
own deformities, says Cheryl Chase, founder of the
Intersex Society of
North America. (For Chase's story, click here.) It
might seem that
designating gender for ambiguous-looking infants is a
mistake altogether. Yet
even the most vociferous antisurgery activists say
gender labels are
necessary to exist in our culture. They argue,
however, that doctors
should simply refrain from medically unnecessary
surgeries that make those
labels permanent. The important thing, Chase says, is
to allow children
with ambiguous genitalia to come to terms with their
identities and to
provide them with counseling as they do so.
But many physicians find this thinking unethical.
Urologists argue that
genital surgeries have the best outcomes if performed
early in life.
Other doctors insist that most reassigned children go
about life quietly
andthey presumecontentedly. Between neighborhood
gossip and the
casual body exposure typical among small children,
these doctors point out,
a child who looks unidentifiably male or female will
quickly become
known to his peers. Leaving such children unaltered,
writes Columbia
urologist Kenneth Glassberg in the Journal of Urology,
cruelly exposes them
to "be considered freaks by their classmates."
Meanwhile, even those who advocate avoiding early
surgery concede it's
not always clear how to answer a small child demanding
change to his or
her external gender. (As with all aspects of the
issue, no statistics
exist to show how often these requests take place. The
state-of-the-art
team at Texas Children's, for example, has only been
in operation for
three yearsso its patients are barely old enough to
talk.) But there
are some clues: At age 3, almost all children identify
themselves as a
particular gender, announcing, if asked, "I'm a boy"
or, "I'm a girl."
They may also have wishes about their external
genitaliaa 3-year-old,
say, might want a penis, even if she doesn't fully
understand what that
isbut a child of 3 or 4 can't really understand the
implications of
surgery. At age 13 or 14, according to conventional
child-development
theory, children are mature enough to start making
serious decisionssuch
as choosing surgery with a full understanding of the
consequences.
With these guidelines in mind, the Texas team tracks
its patients
carefully, offering families psychological counseling,
peer support, and
medical monitoring. The goal is to help the children
themselves to decide
finally how they want their bodies to look. This team
is one example
that, across the country, the reflexive use of gender
reassignment
surgery is waning. But not quickly enough. Unless
they're born in Texas, the
great majority of ambiguous-looking babies will still
be "normalized"
with radical, irrevocable surgery in their first year
of life.
But the anecdotal and scientific evidence is making it
increasingly
clear that this approach, which once seemed obvious,
is not in every
child's best interest. Doctors acknowledge that it is
often medically
unnecessary; many former patients argue compellingly
that early surgery can
be physically and psychically destructive. In the
chaotic first months
after a physically anomalous birth, then, it's the
parents who must
guess how to best ensure a happy future for a healthy
but different-looking
child. That child will later have more options if his
or her parents
decide, first, to do no potential harm.
Related on the Web
--------------------------------------------------------------------------------
Here is an easy-to-read Web site that explains some of
the biological,
medical, and psychological issues faced by intersex
children and their
families. Here is the Web site for Bodies Like Ours,
an organization
that, like the Intersex Society of North America, aims
to help people of
indeterminate gender think about themselves
positively.
Claudia Kolker is a writer based in Houston.
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