Intersex

One out of every two thousand births is an intersex child, and the new baby presents the parents with a sudden gender dilemma. A tradition of secrecy means most parents are totally unprepared.

by Alice Dreger

intersex child
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There was a time not so long ago when parents couldn’t answer the question “Boy or girl?” until a child was born. But nowadays, most people expect parents to be able to answer that question well before birth. That makes things even more awkward for parents whose children have an intersex condition.

Stages of Puberty
It is the brain which tells our sex organs when to mature.

When a child is born with an intersex condition, even though the doctors and parents may have thought they knew what sex the child was from prenatal sonograms, the sex of the child may be unclear. There may be several days of tests before doctors and parents decide what gender to assign such a child.

“Intersex” is a general term used for any form of congenital (inborn) mixed sex anatomy. This doesn’t mean that a person with an intersex condition has all the parts of a female and all the parts of a male; that is physiologically impossible. What it does mean is that a person with an intersex condition has some parts usually associated with males and some parts usually associated with females, or that she or he has some parts that appear ambiguous (like a phallus that looks somewhere between a penis and a clitoris, or a divided scrotum that looks more like labia). It’s important to understand that intersex doesn’t always involve “ambiguous” or blended external sex anatomy. Sometimes a child or adult who is intersexed can look quite unambiguous sexually, although internally their sex anatomy is mixed. This happens, for example, with complete androgen insensitivity syndrome, where a person has some male parts (including a Y chromosome and testes) internally, but is quite clearly feminine on the outside. It’s important to also be clear that intersex is different from transgender in that a person with intersex is born with mixed sex anatomy, where as a person who is transgendered is a person who feels himself or herself to be a gender different than the one he or she was assigned at birth. Some people who are transgendered were born intersexed, but most were born with “standard” male or female anatomy.

When a baby or child is recognized to have an intersex condition, it can be quite traumatic for the parents. Parents want their children to have happy, “normal” lives, and they worry that a child with intersex cannot do so. All parents imagine their children’s futures, and parents of children with intersex conditions can have a very hard time doing that; they’re not sure whether to imagine that child will marry, whether the child will give them grandchildren. As a consequence, the parents’ identities also become confused and uncomfortable.

This is why people like me who advocate for the rights of people born with intersex conditions also actively advocate for the rights of their parents. Too often, because some well-intentioned medical professionals dealing with intersex hope to provide a “quick fix,” parents’ persistent confusion and distress is not adequately addressed. Yet parents in such situations obviously deserve the best care available, including professional psychological and social services. They also deserve help finding other parents who have been through the same thing. Parents I’ve talked with tell me that being able to talk with another parent immediately reduced the amount of stress and confusion they felt, and enabled them to focus on the joy of having a beautiful (and often perfectly healthy) baby.

Unfortunately, until recently, the dominant medical system for treating intersex treated parents as a means to an end.
Psychologist John Money at Johns Hopkins University developed that system which assumed gender is all a matter of nurture, not
nature. Money claimed that any child could be turned into any gender as long as the parents believed in the assigned gender. As
a consequence, doctors told parents of children with intersex what gender a child was and then doctors scheduled intensive
“normalizing” surgeries to try to make the genitals look clearly female or male (usually female). Confusion and distress on the
part of the parents and child were downplayed, because doctors believed the only real issue was the gender assignment, and that
once gender was assigned and sex “assignment” surgeries were started, they had to stay the course no matter what. They assumed a
clear gender identity would alleviate all parental distress and therefore all distress on the part of the child, and that
“normalizing” procedures would provide a clear gender identity.

Money claimed to prove this system worked with a case known as “John/Joan.” After a pediatrician accidentally destroyed the
penis of an identical twin boy (who was not intersexed) during circumcision at eight months, Money recommended to the parents
that the child be made into a girl. They decided to take his advice and for years Money claimed the sex reassignment had worked.
We now know that that child, who grew up to take the name David Reimer, was never happy as a girl. John Colapinto tells his
story–including his attempts to rebuild what he could of the male anatomy that was taken from him in “reassignment” surgeries
in the book As Nature Made Him.

What, then, should parents of a child with an intersex condition know? The first thing they should know is that “ambiguous
genitalia” are not diseased. They just look different. Unusual genitalia may signal an underlying metabolic concern, like
Congenital Adrenal Hyperplasia (CAH), but doctors can usually treat metabolic concerns without doing surgery on the child’s
genitalia. Many babies born with intersex conditions are perfectly healthy and do not require any medical intervention other
than diagnostic tests. Parents therefore need to press doctors to make clear to them which parts of their child’s anatomy
involve threats to their child’s physical well-being, and which are psycho-social concerns. They should also press doctors to
explain which interventions must be done on an emergency basis (for example, when a child is born without any urinary opening)
and which can be put off until parents have had the time to calm down, to get to know their own baby and other parents in
similar situations, and to explore all of their options. They also should actively request referrals to professional and peer
counselors, so that they can express, in a supportive and unhurried environment, their own feelings of confusion, grief, shame,
and fear.

Continue to page two.