- The truth and reality about having an intersexual child
- Q A about your intersex child
- What is intersexuality?
- What do you mean by "ambiguous genitalia"?
- What is the traditional medical treatment for a child with ambiguous genitalia?
- What do I do if I have a child with ambiguous genitals?
- What sex should I raise my baby as?
- What should I tell my child about his/her condition?
- Can an intersexual live a happy, fulfilled life?
- Recommendable Literature
- Recommendable Family Support Groups
- Addendum: A note on follow-ups
We all want the best for our children, and none of us want our children to suffer, but sometimes we can't always agree on what "the best" actually is. If you're the parent of a child born with an intersex condition, you may not be sure what is right for your baby. This information was written by real intersexuals, those of us who live and cope and manage with our conditions all the time. We feel that you deserve to know what it's like for us, and what it might be like for your (current or potential) intersex child. As parents, you deserve that real truth, straight from the source. We'll try to answer your questions here.
Intersexuality is a group of medical conditions that blur or make nonstandard the physical sex of the individual intersexual. They include Klinefelter's syndrome (tubule dysgenesis, mostly, though not always correlating to karyotype 47,XXY), congenital adrenal hyperplasia (CAH), androgen insensitivity syndrome (AIS), and many others. We were originally referred to as "hermaphrodites" or "pseudohermaphrodites", but since these terms tend to make people think of mythical figures, we prefer the term "intersexual". This is about medical conditions, not myths.
Some intersexuals are born with genitalia that are "ambiguous", meaning not completely male or female. Ohers are genitally normal at birth but develop mixed secondary sexual characteristics at puberty. Some forms of CAH involves endocrinal salt-wasting, which usually requires steroid medication, though it can be possible to go off mineralcorticoid replacement (cf. Michel Reiter's "Versuch einer Biographie — oder: Alles was ist, muÃŸ gesagt werden kÃ¶nnen" ). Another major complication, which undebatedly needs surgical intervention — nevertheless not justifiying to do gonadectomy "on that occasion" — to be mentioned here are hernias.
Statistics on the number of intersexuals that are born vary from 1.7% of the population (for all intersex conditions) to 1 in 2000 (for those born with ambiguous genitalia).
Ambiguous genitals can take many forms. The male and female genital characteristics can be combined in many different ways, or there can even be no external genitals at all. None have both a functional penis and a functional vagina, however (wide vs. narrow sinus urogenitalis and phalloclit length are not independent parameters).
The traditional treatment is for the doctors to decide doom a predetermined checklist what sex your baby should be, and then surgically modify your child to resemble that sex. We disagree with this treatment for a variety of reasons.
First, the deciding factors tend to be mostly ease of surgery, at times also sportive ambitions ("urologists like to make boys" quoted in Kessler's 1990 article)... in other words, the pediatric surgeon's convenience. Over 90% of intersex children are assigned to the female gender, because "it's easier to make a hole than to build a pole" (quote from Gearheart, surgeon practising at Hopkins Univ., Baltimore, MD). Often the deciding factor is penis length. If the medical personnel feel that your child's penis is not big enough, they will remove it and assign the child to the female sex. We feel that since intersex children have been affected by both male and female hormones before birth, it is impossible to tell what sex your child will prefer once he/she is old enough to talk about it.
In case male assignment is considered they do HCG tests (HCG=human chorionic gonadotropine) to see if the kid is able to produce testosterone in "sufficient" amounts, and if this doesn't work also apply testo, to see if the kid can "sufficiently" respond to it. I (HB) have heard complaints by mothers that toddlers did not calm down w/in a few days after the injections as promised by docs, but went on acting abnormally aggressively for quite some time. In other words, do yourself and your kid the favor to "forswear".
Second, the surgeries are not very good. Operating on infant-size genitalia is not an easy thing, and procedures such as clitorectomy (removal of the clitoris) resp. clitoriplasty (clitoral reduction) often leave the individual with significantly diminished or no sexual sensation later in life. In addition, bulging or even keloid scar tissue can build up, leaving an appearance that is not cosmetically good. Also, scars, even if not visible, can be the source of painful sensations even after decades still. A major problem is damaging of corpora, which causes almost unbearable pain when genital swellings ("erections") occur.
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