What
would you do if your baby was born intersex, with sex
organs and external genitalia not clearly male or
female? How would you choose whether to bring up your
child as a boy or a girl and decide whether doctors
should perform corrective genital surgery?
New York — A
series of new studies and a book, "Intersex and Identity"
(Rutgers University Press, 2003), seek to provide the
answers to these questions.
Yet despite this
research, the ultimate choices may have less to do with a
child's medical condition than with the hospital selected
for childbirth. If this sounds like an anomaly in an era
of evidence-based medicine, you are right.
It was only a dozen years
ago that decisions about intersex children, who make up
roughly 1 in 2,500 births, were made independently by
physicians. So when infants were born with congenital
adrenal hyperplasia, in which the female sex organs do
not respond to hormones in utero, doctors shortened the
enlarged clitorises and created vaginas. Surgeons
converted boys born with extremely small penises, a
condition known as micropenis, into girls, building
clitorises and vaginas.
What led physicians to
make such monumental decisions, often without consulting
parents? The years after World War II represented a high
watermark for Freudian psychiatry, with its emphasis on
the significance of external genitalia. Physicians
adopted this notion of anatomy as destiny, using surgery
to create a clear gender identity.
Postwar surgeons readily
removed ovarian or testicular tissue and refashioned
external sex organs. As the saying went, "A chance to cut
is a chance to cure."
The trouble was, it
wasn't clear what was being cured. Or so said a group of
intersex people who became activists in the 1990's. Some
learned about their histories because of sexual or
medical problems involving their genitals.
Others obtained their
medical records. What united them was anger that their
variant genitalia had been treated like a disease and
"corrected" secretly.
Foremost among these
activists is Cheryl Chase <http://en.wikipedia.org/wiki/Cheryl_Chase_%28activist%29>,
born in 1957 with a micropenis. Although initially
considered to be a boy, doctors eventually amputated her
genitals and told her parents to raise her as a girl. She
lived with deception and shame for years before going
public.
Ms. Chase worked with
other intersex people, academicians and doctors to found
an advocacy organization, the Intersex Society of North
America <http://www.isna.org/>,
in 1993.
Like other health related
advocacy groups that emerged after 1970, the society
promoted full disclosure of medical information and
informed consent. In the case of intersex, this strategy
meant making parents active partners in
decisions.
Dr. Alice D. Dreger, a
historian of medicine who until recently was the
chairwoman of the intersex society's board, says that
surgeons had sought to convert complex psychosocial
issues into simple anatomical problems that could be
fixed. This strategy, she adds, is based on supposition,
not research.
Given that such claims
challenged long accepted dogma, it is not surprising that
many surgeons and endocrinologists responded defensively.
Some called the activists zealots.
Today, almost all doctors
involved with intersex infants say they believe that
parents must actively participate in decisions. But that
is where agreement ends.
The intersex society has
recently called for a moratorium on all nonlifesaving
surgery on intersex children until they are old enough to
participate in decisions. This policy stems in part from
several recent studies, which found sexual and
psychological problems among intersex adults who had
surgery as infants.
In one study, published
in The Lancet <http://www.thelancet.com/>
in April, Catherine L. Minto, a British researcher,
surveyed 39 intersex adults who were reared as women. All
28 who were sexually active reported having sexual
difficulties; 18 who had undergone clitoral surgery said
they had often experienced inability to achieve orgasm.
Sharon E. Preves, a sociologist at Hamline University in
Minnesota, who interviewed 37 intersex adults for
"Intersex and Identity," agrees, adding that the surgery
is "experienced as degrading and shaming."
"I have yet to read
about, hear or meet an intersex person who is grateful
for surgery done on them as an infant," said Dr. Monica
J. Casper, a sociologist who is executive director of the
intersex society.
When certain physicians,
like Philip Gruppuso, a pediatric endocrinologist at
Brown, see an intersex infant, they now usually recommend
against surgery. Lacking proof of its value, Dr. Gruppuso
says, deferring surgery is easy.
Other doctors, however,
object to such a blanket policy. It is one thing to
advocate for patient autonomy, Dr. Kenneth I. Glassberg,
a pediatric urologist at Columbia University, wrote in
The Journal of Urology <http://www.duj.com/>,
but quite another to allow children with variant
genitalia to "be considered freaks by their
classmates."
While Dr. Glassberg
acknowledges that some celebrated cases of corrective
surgery have gone poorly, he adds that most patients -
akin to a silent majority - are content with their
outcomes. A hard-and-fast rule against early surgery, he
says, "is itself experimental, and more of an experiment"
than the operations.
One possible solution
lies in collecting more data. A new task force, led by by
a Medical University of South Carolina pediatric
urologist, Dr. Ian A. Aaronson, is to issue formal
guidelines.
Yet gathering such
information and applying it to the lives of newborns will
not be easy. For one thing, most of the survey data come
from intersex people who belong to activist groups. While
compelling, these interviews may represent a biased
sample.
An intersex condition is
not pneumonia, a medical problem amenable to antibiotics
and outcome studies. Given the wide variety of intersex
conditions and the intensely personal issues they raise,
not even better data will provide parents with easy
answers.
