Besides their more serious function, prenatal ultrasounds
also mean that deciding between pink and blue for the
nursery has become a straightforward business that needn't
wait until after the birth. But sometimes the scans lie
— or aren't as clear cut as they seem. That's what
Lisa Smith found out by experience.
Shortly after giving birth to her
son Ryan, she was called back to the hospital by a team
of specialists. "They brought me in a big board room
with probably about twenty doctors and told me that
I didn't have a little boy, I had a little girl," she
recalls. "I thought the whole time I was pregnant with
a boy."
Ms Smith's daughter, who was re-named
Samantha, has congenital adrenal hyperplasia (CAH),
an ongoing hormonal imbalance that stems from the adrenal
glands and alters the development of the fetus. It is
one of several conditions that lead to ambiguous genitalia,
or what some experts now call intersexuality, which
account for roughly 1 of every 2,000 births. Depending
on the severity of the case the overproduction of androgens
can lead to ambiguously defined genitalia, and female
patients, like Samantha, may have an enlarged clitoris
or fused labia over the vaginal opening. Children born
with this disorder require cortisol replacement therapy
in short order, or else risk life-threatening consequences.
After puberty, the condition is treated with hormone
replacement therapy, either oral or IV, for the rest
of the patient's life.
"In Canada, any child who's born
with a genital or chromosomal difference is seen by
what's called a gender team," explains Sheila Keaton,
a nurse clinician in endocrinology at the Children's
Hospital in Vancouver. "The role of the team is to advise
the primary physician as to what further information
needs to be obtained in order to clarify what has happened
for this child." The team in question is made up of
endocrinologists, gynecologists and geneticists, among
others, who get called in to examine the patient to
determine the cause of the ambiguous genitalia.
"There are expected parameters
of what a child should look like," says Ms Keaton. "If
the appearance of the child's genitals is outside what's
expected, then there is concern about why this has happened,
because some of the conditions that affect the appearance
of the genitals are actually life-threatening." Ms Keaton
is referring to the immediate risks of the disease,
adrenal crisis with dehydration (typically through vomiting)
and shock. Severe cases can be fatal if not properly
diagnosed and treated.
SURGERY'S
POPULARITY WANES
Of course, many gender ambiguities aren't life threatening,
and the most severe risks are often psychological. Parents
can opt for surgical procedures to correct both functional
and aesthetic aspects of their children's bodies, but
the push to 'normalize' children isn't nearly as strong
today as it was earlier last century.
"The last 50 years saw a very clear
shift of the pendulum in one direction and then over
to the other direction," explains Ms Keaton. She says
that the major trend from the 60s to the 80s was influenced
by John Hopkins sexologist Dr John Money, who advanced
a theory of genital-based gender identity. In short,
the Money theory said that doctors could essentially
create any gender for any child, providing the cosmetic
work was carried out early enough.
The validity of the Money theory
was called into question when his model patient, referred
to as John/Joan, decided to resume her life as John
when she was 14. It emerged he was really David Reimer
from Winnipeg. After living as a man and getting married,
David killed himself at 38. When the story broke, the
changes in the medical handling of intersex children
were swift and far-reaching.
"The pressure came back up the
pipe to the physicians who were participating in the
whole topic of gender assignments," says Ms Keaton.
"Teams such as the one I participate in immediately
studied all of this information that was now available
both from families and from experts in the field. The
end result was a total turnaround in the attitude that
you could surgically create gender, raise the child
in that gender, and everything would turn out fine."
Moderation and a patient/ parent-centred
model are beginning to dominate the handling of intersex
infants. This goes for hormone treatment as well. With
hormone replacement therapies of all stripes garnering
a lot of bad press these days, patients and parents
are starting to question their validity, and researchers
are responding with new fervour.
For the time being, Ms Smith has
decided to let Samantha live out her life in the body
she was born in, and says she will remain supportive
of her daughter should she decide to get cosmetic surgery
at a later age.
"I think that's an issue for a
lot of parents," she says. "We want our children to
be so-called normal in society. I don't think she'll
have any difficulty," she adds.
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