NYTimes: When Gender Isn't a Given

New York Times

When Gender Isn't a Given

Surgery for children with genital abnormalities was once automatic.
Now, parents are involved, and the choices are complex.

By MIREYA NAVARRO

Published: September 19, 2004


Photo 1:
http://graphics7.nytimes.com/images/...19inte.583.jpg
Caption:
Lawrence Frank for The New York Times
CHOICES Lisa Greene found a compromise for her daughter.

Photo 2:
http://graphics7.nytimes.com/images/...n/19inte.2.jpg
Caption:
Herb Swanson for The New York Times
Jeff and Jody Spear chose reconstructive surgery.


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

I find it interesting that Ms. Greene, who is most likely a single
parent researched & opted for a more open minded approach to her
daughter's physical condition than some of the other "nuclear family"
based mothers.

Since I have not ever been a parent, I don't know much about the
social peer pressure parents feel when confronted with having to raise
a child whose physical appearance in any way draws undesirable
attention.

Obviously we are not talking about acne here.

Hmmm, it does highlight an interesting not so mainstream issue as
regards the basic human rights of the child.

This article reminds me of a quote by Mr. Fredrick Koeing:

"We tend to forget that happiness doesn't come as a result of getting
something we don't have, but rather of recognizing and appreciating
what we do have."


Kindest Regards,
Yerodin


(Sufaud) wrote in message m...
New York Times

When Gender Isn't a Given

Surgery for children with genital abnormalities was once automatic.
Now, parents are involved, and the choices are complex.

By MIREYA NAVARRO

Published: September 19, 2004


Photo 1:
http://graphics7.nytimes.com/images/...19inte.583.jpg
Caption:
Lawrence Frank for The New York Times
CHOICES Lisa Greene found a compromise for her daughter.

Photo 2:
http://graphics7.nytimes.com/images/...n/19inte.2.jpg
Caption:
Herb Swanson for The New York Times
Jeff and Jody Spear chose reconstructive surgery.


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.
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.


Big snip


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.

Big snip

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.

Big snip

"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

(Yerodin) wrote in message . com...
I find it interesting that Ms. Greene, who is most likely a single
parent researched & opted for a more open minded approach to her
daughter's physical condition than some of the other "nuclear family"
based mothers.

Since I have not ever been a parent, I don't know much about the
social peer pressure parents feel when confronted with having to raise
a child whose physical appearance in any way draws undesirable
attention.

Obviously we are not talking about acne here.

Hmmm, it does highlight an interesting not so mainstream issue as
regards the basic human rights of the child.

....

One can usefully compare this debate to those constantly running in
these and other newsgroups (including soc.culture.jewish and
soc.culture.african) over (infant male) circumcision and female
genital mutilation. Or, less frequently, to tribal scars and
tattooing. In part the issue there is allegiance and obligation to the
culture and society versus individual human rights (including the
right to opt out of the culture of birth). In the USA, the Indian
Child Welfare Act represents a legislative decision in favor of the
group (rather than the individual) rights in matters of adoption and
Native American culture, but that proved necessary because of the
in-buiilt (Christian) bias of civil (state-court) judges.

To return to the situation at hand (which includes, of course, those
extremely rare cases of accident or negligence during circumcision,
causing irreparable damage) there have been horrendous instances of
malpractice and bad medical decisions in how to deal with the
situation. Medicine has fads, like any other profession or sector; but
even more importantly new discoveries and new capabilities make older
treatments -- and decisions -- obsolete. I think the practice of
minimal intervention respects that fact. It isn't so much that the
child can make her/his own decision later, but that the likelihood of
regret and remorse after an irreversible surgical procedure is
overtaken by events and later discovery is so great as to overwhelm.
The Reimer case is one in point:
http://www.cbc.ca/news/background/reimer/

An arrogant -- and wrong (not only in retrospect, but at the time) --
surgeon and gender "expert" ruined a child's life and led directly to
his eventual suicide.

One must be humble before anomalies of nature. And even more humble
before human mistakes. Whatever may be said politically about tort
reform, the threat of a liability claim does keep doctors honest. Even
though most medical mistakes yield zero, or minimal, recompense the
pubilcity of those that pay generously (i.e., the clients VP candidate
John Edwards used to accept) makes doctors generally more careful.