Gender Bender
Our Sexual Identity Has Little to Do With Sex Organs, Researchers Find
Jan. 22 — Is it a boy or a girl?
It's the first question most parents ask about their newborn baby. But for a
surprising number of infants, the answer is not immediately obvious.
Doctors say as many as 1 in
2,000 babies is born with ambiguous genitalia —
neither totally male nor female. For parents, the decision about how to proceed
is often agonizing, and the stakes are high: the wrong choice could trap a
little boy inside a girl's body or create a girl who longs to be a man.
Now a new study in the New
England Journal of Medicine is shedding more light on what factors make us
feel male or female. The research examined 16 genetically and hormonally male
babies born with a rare birth defect called cloacal exstrophy (unlike cases
where the genitalia are ambiguous, male babies born with cloacal exstrophy have
a small or non-existent penis).
Traditionally, doctors
believed that without a penis, these children would not be able to form a
healthy male sexual identity. So, 14 of the 16 babies were assigned the female
sex, given female hormone treatments and raised as girls.
But follow-up
questionnaires given years later suggest that the female label did not stick
very well.
"These children were
born male in nearly every respect," explains study author Dr. John
Gearhart, professor and chair of pediatric urology at Johns Hopkins Hospital in
Baltimore.
The Key? Hormones
Gearhart found eight of the
14 subjects now declared themselves male. All 16 of
the children enjoyed typical "male" pursuits such as baseball,
football, and hockey. Only one played with dolls, and most rejected feminine
clothing.
The study illustrates what
was once unthinkable — that a person can feel like a male without a penis — is
completely possible, maybe even predictable, given what we now know about how
sexual identity is formed.
Hormones are key. "What we now know is that hormones imprint your
brain," explains Dr. Craig Peters, a urological surgeon at Children's
Hospital in Boston. "We don't know exactly when it happens, but probably
even in utero."
Studies like Gearhart's
have helped change policy. Now male babies born with cloacal exstrophy would be
recognized as male. "One very seldom does gender conversion [for this
condition] anymore," Gearhart says.
Yet surgery for other
conditions, especially those involving ambiguous genitalia, is still common.
"Probably the most common condition for gender conversion is male
pseduo-hermaphroditism," Gearhart explains.
So
How Do Parents Decide?
Parents and doctors have a
variety of scientific tools to tell aid them in determining a baby's sex if the
genitalia are ambiguous. Genetic testing is performed to check for the presence
of a "Y" chromosome. Males are XY; females are XX.
An internal exam determines
the shape of the pelvis and checks for the presence of female sex organs like
ovaries and a uterus. Physicians evaluate whether the person has the potential
to be a fertile male or fertile female.
Doctors also check the
baby's levels of male hormones (called androgens, like testosterone) and female
hormones (such as estrogen). In each case, the sex hormones are created by the
gonads — testes for males and ovaries for females.
But production of hormones
is only half the battle. The body must have receptors that sense the presence
of the hormones or sexual characteristics will not develop normally.
Babies who are born genetic
males but lack sensitivity to male hormones are sometimes born with ambiguous
genitalia, and often the decision is made to raise them as female because
treatment with female hormones is considered more successful. A surgeon shapes
the genitalia into female sex organs.
At Johns Hopkins Hospital,
they have a "gender committee" that meets whenever an intersex baby
is born. The team is headed by a pediatric endrocrinologist, but also contains
a surgeon, a social worker and a clergyman among others. Together with the
parents the team evaluates the baby and decides upon the best course of action.
What is "best,"
of course, is still under debate, but Gearhart hopes the increased attention to
the issue of sexual identity will help future kids caught in the middle.
"These long-term studies provide better science for the younger generation,"
he says.
Intersex
Group Calls Surgery 'Mutilation'
Not all those born with
ambiguous genitalia are happy about surgery that alters their sex. An
organization called Intersex Society of North America, or ISNA,
is devoted to educating people about intersex individuals, and they are
challenging the way doctors treat intersex babies.
The group contends surgery
can damage a person's sexual function for life. The patient may lose feeling in
his or her genitals and be unable to have normal sexual relations. Some
intersex individuals even call the surgery "mutilation."
ISNA recommends letting the
patient decide whether or not to have surgery, which means waiting until a
child is old enough to make such a complicated decision.
But many physicians believe
it would be more harmful to wait, and worry about the impact of growing up
intersex in a world unprepared to deal with such variety. "I've had
parents say, 'I can't stand changing the diaper,' " Peters says.
But ISNA argues it is
society's job to adjust to intersex individuals and recommends counseling for
families and patients dealing with the issue.
While Gearhart praises ISNA
for raising awareness about intersex issues and pushing doctors to rethink
their positions, he adds, "Initial studies from Hopkins are finding that
most intersex people don't support the idea of a third gender."
Notes Peters, "A lot
of the adults complaining about the surgery is based
on old technology. We didn't know as much then, and surgeons would do things
like cut away the entire clitoris. Surgery has improved a lot over 20 years
ago."
But some surgeons find
merit in ISNA's message.
"It's rare that an
enlarged clitoris would cause any medical problems, so we have time to
wait," says David Vandersteen, pediatric urologic surgeon and vice-chief
of surgery at Children's Hospitals and Clinics of Minneapolis/St. Paul.
"[Gearhart's study] suggests that the relationship between external
genitalia and psycho-social development is moderate at best, and shows there is
good psychological foundation for leaving well enough alone."
Another point of debate is
what and when an intersex child should be told about his or her medical
history. In Gearhart's study, the children and young adults still living as
females have not been told about their male genetic status.
ISNA favors telling kids as
much as they can digest while they are still very young. Doctors are less sure
about the timetable.
"A lot of bitter
adults are bitter because they were never told," Peters says. "I
believe kids should know but I don't know when. Finding out this information as
a teenager would be difficult."
http://abcnews.go.com/sections/Living/Living/intersex_babies_040122-1.html
Intersex
Babies Controversy Over Operating to Change Ambiguous
Genitalia
April 19 — Hida Viloria, 33, is not the
least bit confused about her gender.
"I'm female," she
says, "I just feel like I'm a different variety of female." She's
different because she was born with ambiguous genitalia. "My clitoris is
much larger than, I think, the average size clitoris," she explains.
"And so because mine is larger, it's grown a little more to where it
starts to resemble a small penis."
Viloria had no idea she
looked different from other little girls until she was 11, when she saw one of
her friends as they changed into their bathing suits.
Thousands
of girls like Viloria who are born with ambiguous genitalia — known as
hermaphrodites or intersexual — have routinely undergone surgery as babies to
remove or reduce an enlarged clitoris.
Many doctors believe that
operating on an intersex baby's genitals within the child's first year is best
for both the child and the parents.
"We believe operating
on the genitals in infants is psychologically better to do when the child is
younger," says Dr. Kenneth Glassberg, a pediatric urologist. "I think
the individual who is not operated on will have problems in society as we know
it today."
The American Academy of
Pediatrics also says early genital surgery may be best for intersex babies. But
over the last few years, a storm of controversy has erupted over the ethics of
surgery for intersex babies. Some intersex adults, like Viloria, who has not
undergone any surgery, charge that the surgery, for cosmetic purposes, is
nothing short of mutilation.
For
Viloria, Information — Not an Operation
Growing up, Viloria says
she was a popular, sociable tomboy who excelled at sports, but never doubted
she was a girl. She got her period and knew she could have a baby some day. She
did, however, hit a rough patch when she became sexually active. First she
dated men, but then, like many intersex women, she says she realized she was a
lesbian. That's when she understood just how different her genitals were from
other women's.
"Everybody knows how
penises function," says Viloria. "But clitorises actually function
the same way. And so for an enlarged clitoris, there's a pretty visible
difference when you're being sexually active."
Essentially, she explains, she
had an erection: "I enjoyed that immensely, and so did my partners."
But she was mystified, and
wanted some answers. "I did kind of wonder if maybe I was male," she
says. "But I knew, technically, I wasn't."
At 27, she figured it out —
far less traumatically, she says, than if she'd had
surgery. She happened to see a newspaper article about intersexuals, a term she
had never heard before.
"I just remember being
like … Oh my God, I think this is me," she says. "I was overjoyed to
know what I was."
Because her answer came
from information — not the operating room — she thinks intersexuals should not
undergo operations as babies. Instead, she says, they should be allowed to
decide as adults if they want their genitals altered.
A growing number of
doctors, who argue that the surgery is about as medically necessary as a
facelift, agree with Viloria.
"We've heard more and
more and more people coming forward saying, 'This hurt
me, either physically, psychologically or both,'" says Dr. Bruce Wilson, a
pediatric endocrinologist at Michigan State University. "To hear a group
of people saying, 'I don't have normal sexual response,' 'I have painful sex
because of the scar tissue,' 'I feel completely asexual because of what was
done to me,'" says Wilson, was all he needed to lead the revolt.
Cheryl Chase is one of the
angry intersexuals who had an operation at 18 months old. Doctors removed her
clitoris because it was enlarged, a surgery known as a clitorectomy.
"I can't have an
orgasm," says Chase, who believes her inability is due to the surgery.
Glassberg believes the
clitorectomy would not have been performed if Chase were now an infant, because
doctors now reduce the size of the clitoris instead of removing it. But some
physicians say that even a reduction may damage nerves and interfere with
sexual pleasure.
"Any time I think
about it, and think about the fact that it could have happened, I just thank
the universe above," says Viloria. "Accept that we're here,"
says Viloria. "Don't try to cut us up or change us or shame us or hide
us."
http://abcnews.go.com/sections/2020/DailyNews/2020_intersex_020419.html