[Paleopsych] NYT: When Gender Isn't a Given

[Premise Checker]

When Gender Isn't a Given
NYT September 19, 2004
By MIREYA NAVARRO

AT the moment after labor when a mother hears whether her
new child is a boy or a girl, Lisa Greene was told she had
a son. She named her baby Ryan and went home. Ms. Greene
learned five days after the birth that her baby was really
a girl.

Doctors who ran tests diagnosed congenital adrenal
hyperplasia, a condition that, put simply, can make baby
girls' genitals look male. As the young mother struggled to
get over her shock, to give explanations to relatives and
put away the blue baby clothes, she also had to make a
decision: whether to subject her daughter to surgery to
reduce the enlarged clitoris that made her look like a boy,
or leave it alone.

Thus Ms. Greene, a 26-year-old cashier in East Providence,
R.I., was thrown into a raging debate over a rare but
increasingly controversial type of cosmetic surgery.

For decades, parents and pediatricians have sought to offer
children whose anatomy does not conform to strictly male or
female standards a surgical fix. But the private quest for
"normal" is now being challenged in a very public way by
some adults who underwent genital surgery and speak of a
high physical and emotional toll.

Some of them gave tearful testimony at a hearing last May
before the San Francisco Human Rights Commission, which has
taken up the surgeries as a human rights issue and is
expected to announce recommendations before the end of the
year. They spoke of lives burdened by secrecy, shame and
medical complications: some said the surgeries robbed them
of sexual sensation and likened the procedures to
mutilation; others said they were made to feel like freaks
when nothing was really wrong with them.

But a more common argument was that the surgeries are
medically unnecessary and should at least wait for the
patient's consent. Some doctors are starting to agree.

"Everyone's rethinking this," said Dr. Bruce Buckingham,
associate professor of pediatric endocrinology at Stanford
University. "We're probably a little less aggressive than
we used to be. There's a lot of opinion."

But more opinions and inconsistent medical practices have
made the decision tougher than ever for parents, many of
whom are confronted with the word "intersex" for the first
time. The term describes cases that arise from a host of
conditions that cause sex chromosomes, external genitals
and internal reproductive systems not strictly to fit the
male or female standard.

Although no national statistics are available on the
surgeries, some pediatric urologists and surgeons say they
are doing fewer of them early. Doctors say the majority of
cases involve girls with congenital adrenal hyperplasia, or
C.A.H., a hereditary disorder that affects the synthesis of
adrenal hormones and leaves girls with high levels of male
hormones. The condition may cause not only male-looking
genitals, even in the presence of fully formed ovaries and
uterus, but also personality traits and interests typically
associated with boys.

The incidence of anomalous genitals in C.A.H. patients is
not known precisely, but some studies indicate it may occur
in as few as one in about 30,000 births because only girls
are affected. Surgeries for other intersex conditions are
even rarer, doctors say. But for the minority of parents
who must choose whether surgery is the best course of
action, the decision is unlike most others they may make on
behalf of their children.

Some parents say they choose largely in the dark because
there are no comprehensive long-term studies showing how
patients fare as they grow up, with or without genital
surgery: data on sexual function, for example. At the same
time, some parents note, some doctors inform them of the
option to do nothing, while others advise to do the surgery
right away.

There is the steady drumbeat of opposition to surgery from
a vocal intersex movement, but some parents wonder whether
there is a silent majority of satisfied patients. And then
there is the question: What would the child want them to
do?

Worries about such an intensely personal matter often
surface anonymously on computer message boards. "It's very
hard to know what her feelings will be when she is older,"
read one message posted this summer on a Web site for
families affected by congenital adrenal hyperplasia. "Will
she hate us for letting her have the surgery? Or will she
thank us for having it done when she was young enough not
to know?"

In Rhode Island, Ms. Greene said she was confused and
overwhelmed at first, not just with the news of her baby's
change of gender but also with medical problems related to
C.A.H., which kept her daughter in and out of the hospital
for the first year. Ms. Greene said that at first she was
determined to do a clitoroplasty, or reduction of clitoral
size, fretting over whether people would call her daughter
hermaphrodite, a term from Greek meaning one with male and
female sexual organs, and suggestive, in modern times, of a
sideshow attraction.

"She looked identical to a boy," said Ms. Greene,
explaining that in addition to a large clitoris, her
daughter's labia was fused together and she had no vaginal
opening. "It's hard for a parent not to think of the
psychological damage." She said she was speaking candidly
because "in a way, I'm telling other parents that it's not
something to be ashamed of."

Ms. Greene said her child's doctors recommended against
surgery, warning her of risks like possible nerve damage.
Skeptical, she went to the library to do her own research
and on the Internet, where she said she sent e-mail
messages back and forth with adults with the same
condition.

In the end she consented only to creating a vaginal opening
and rebuilding the urethra last year. Although whether
vaginoplasties should be done early is also a subject of
debate, Ms. Greene said her daughter, now 4 1/2, would have
needed to undergo the procedures sooner or later to
menstruate and for heterosexual intercourse. Ms. Greene
deemed them medically and psychologically easier on the
child if done early.

But Ms. Greene said she opted to wait for her daughter to
grow old enough to make other decisions for herself. "They
tell me that what I've done is the best compromise," she
said.

Some parents weigh the same pros and cons and come out in
favor of surgery, however. In San Jose, Calif., the
28-year-old mother of another girl diagnosed with the same
congenital condition said doctors told her that today's
surgical techniques spare nerves and are less extreme.

To her the psychological issues seemed more crucial than
the physical risks and her daughter underwent a
clitoroplasty last month at the age of 4. "My problem is
the adolescent period," said the mother, a medical
assistant who spoke on condition of anonymity to protect
the privacy of her family. "Growing up a teenage girl is
hard enough. I never want her to feel different. I never
want her to have extra issues to deal with."

"When she's a teenager, and she's in a girl's locker room,
it's not going to be a cute situation," the mother said.
"Society is a big issue here. I tell my husband, if we
lived in a deserted island she'd never need this."

Jeff Spear, 37, a farmer in Maine whose 11-month-old
daughter underwent a clitoroplasty along with other
surgical procedures six months after birth, said he hardly
considered the surgery cosmetic given how male she looked.
Mr. Spear rejected the idea of waiting for his daughter's
consent. "You're the parent, you make the decisions," he
said. "We felt this needed to be done right now."

The more "virilized" the appearance, the more likely
parents will choose surgery, said Kelly R. Leight,
executive director of the Cares Foundation, a support and
educational group for families affected by congenital
adrenal hyperplasia. While more parents are beginning to
question the surgeries, more often than not they choose to
operate within the first year, said Katrina A. Karkazis, a
medical anthropologist and research associate with the
Stanford Center for Biomedical Ethics.

Ms. Karkazis, who interviewed parents, doctors and people
who had undergone early surgery of the clitoris, vagina and
testes because of C.A.H. or androgen insensitivity
syndrome, another condition that affects the development of
genital organs, said doctors and parents who favored
genital surgery were driven by cultural factors, like their
own values about appearance and worries about how the child
would be treated by others. Most of the adults who had
undergone the surgery as children, however, told Ms.
Karkazis they were unhappy with the results and complained
of lack of sensation or pain, of the need for repeated
surgeries and of the fact that they had thick scarring and
the genitals never looked "normal." Few were in intimate
relationships, she said.

Since the 1990's, adults unhappy with the operations have
been raising their profile, denouncing a standard of
treatment they say is based on cultural biases, and on
arbitrary ideas of male and female and of the ability to
assign gender.

The most famous case of "gender management" was not
intersex but illustrated the point: David Reimer, raised as
a girl after a botched circumcision, rejected the identity
assigned to him later on in life and lived his teenage
years and adulthood as a man, proving wrong researchers who
believed sexual identity is made rather than born. He
shared his story in a 2000 book, "As Nature Made Him" by
John Colapinto, and appeared on "The Oprah Winfrey Show."
Last May, depressed after losing a job and separating from
his wife, relatives said, he committed suicide at 38.

Some doctors say that even when gender seems certain, as in
the case of C.A.H. patients, who can also be fertile and
bear children, there are questions surrounding the effect
on the girls of high levels of androgens.

Dr. Patrick H. McKenna, chairman of the division of urology
at Southern Illinois University School of Medicine and a
member of an intersex task force of the American Academy of
Pediatrics, said that both the mixed results of surgery on
sexual sensation and the idea that some patients may
identify more with the opposite gender upon growing up has
led him to recommend against early surgery in intersex
cases.

He and other doctors said medical centers are increasingly
involving psychologists and other specialists in handling
intersex cases because of their complexity.

"There's no good scientific data, and more and more we're
leaning toward waiting," he said.

The Intersex Society of North America, a group representing
intersex adults founded in 1993, advocates that children
with anomalous genitals be raised in a specific gender even
without surgery, but not be regarded as "a social
emergency," as pediatric guidelines have called these cases
in the past.

Cheryl Chase, the group's executive director, said its
efforts are now focused on influencing how medical schools
teach the intersex subject; she said that if doctors
learned alternatives to early genital surgeries, including
a treatment model that incorporates psychological support
for families, they would in turn help parents see their
children's condition more as a natural variation than a
cause for panic.

In many cases, opponents of the surgery say, parents have
hidden the medical history from their children. Betsy
Driver, 40, a television news freelancer from Easton, Pa.,
who runs an online support group, Bodies Like Ours, said
she underwent an extreme form of clitoral surgery as an
infant because of congenital adrenal hyperplasia but did
not fully learn the details of her condition until her
30's.

"I felt my parents could not love me the way I was," she
said. "There was nothing wrong with the genitals. They just
looked different."

It took her years of therapy to come to terms with her
intersex condition, said Ms. Driver, who said she was left
with no clitoral sensation. "Dating was exceptionally
difficult," said Ms. Driver, who is gay and said she did
not start dating until her 20's. "It was body image, fear
of rejection and not being able to explain why I was
different. Now, because I can explain, it's no big deal."

But she added, "Not doing the surgery is not a magic
bullet." Parents need to talk openly about their children's
bodies and teach self-esteem, she said.

Ms. Greene said she was trying hard to do just that. She
said her daughter was old enough to be curious and
constantly asked questions about the way she looked.
"Bigger means better," Ms. Greene tells her.

Ms. Greene said she had warned preschool teachers about her
daughter's physique "so they're not surprised" if she ever
has an accident.

She said she was compiling a huge folder with information
so her daughter had the facts as she grew up. "We're not
ashamed of it, and she should not be ashamed of it," Ms.
Greene said.

"I just came to the conclusion that we'd raise her with as
much confidence as we can," she said. "If she chooses as an
adult to have the surgery, I'll support her."

http://www.nytimes.com/2004/09/19/fashion/19INTE.html