Parents of
Intersexed Children FAQ
by Raven Kaldera & Heike Bödeker
THE TRUTH AND REALITY ABOUT HAVING AN INTERSEXUAL CHILD
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.
QUESTIONS AND ANSWERS ABOUT YOUR INTERSEX CHILD
What is intersexuality?
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,
muß gesagt werden können" at
http://home.t-online.de/home/aggpg2/bio.htm). 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).
What do you mean by "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).
What is the traditional medical treatment for a child
with ambiguous genitalia?
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.
Doctors often claim that they can create "perfectly functional"
genitals, but to date only one follow-up study has been done, and it does not
look good for their claims. (Dr. David Thomas, a pediatric urologist in Leeds,
England, did a follow-up study on 12 intersexuals surgically
"assigned" as girls; all had surgery that was unsatisfactory in some
way and in 5 of the 12, the relocated sexually sensitive tissue had withered
and died.) Many of us, as adults, suffer from intense anger and depression due
to lack of genital sensation.
Post-surgical intersexuals can also be more prone to urinary tract and other
infections.
Third, when artificial vaginas are constructed in children, they need to be
"dilated" to keep from closing up. This involves the parent being
forced to penetrate their child's genitals with a plastic "stent" on
a daily basis for a long time. In any other context, this would be considered
sexual abuse, and indeed many of us are psychologically and sexually damaged by
this procedure. For that matter, asking a small child to expose their genitals
repeatedly to crowds of doctors, interns, and medical students, which often
happens on check-up visits, is also damaging.
Fourth, there is no real health or safety reason to operate on infant
genitals solely for reasons of gender ambiguity. Any such reconstructive
surgery can be done with much better results at or after puberty, when the area
is adult-sized. Some doctors claim that allowing a child to grow up with
ambiguous genitals will lead to that child feeling suicidal. In fact, there is
absolutely no proof of this. (No such studies have been done on most
intersexual conditions; the one small study that was donw by Dr. Justine
Schrober on the quality of life of 12 men with very small penises found that
they were doing fine and many had supportive spouses/partners.) However, many
of us as adults have become suicidal due to unsatisfactory surgeries and our
treatment at the hands of the (still experimenting) medical community.
What do I do if I have a child with ambiguous genitals?
Do not let the doctors operate on your child unless there is a real medical
emergency, such as a blocked urethra or other urinary or bowel trouble. Make
sure that they understand your position on intersexuality before your child is
born, so that less trouble will arise. In some cases that we know of, doctors
operated on children anyway without the knowledge or consent of the parents.
Don't let this happen! Your child's genital tissue must remain unmarred until
they are more physically mature.
What sex should I raise my baby as?
You need to make your own decision regarding how your baby is to be raised.
We, as intersexuals, were generally able to decide what sex we felt ourselves
to be by puberty. This means that you, the parent, not a team of doctors, can
and should make the final decision about your baby's sex....as long as you
remember that any choice you make might turn out to be the wrong one. Some of
us do change sex later in life, and you should do your best to be open to this
possibility. There is no scientific evidence for the medical community's claim
that we will stay whatever sex we are raised. We are not blank slates at birth;
we are simply do not have the means to make our wishes known in infancy.
Although consulting the doctors involved can give you useful information to
help you with your choices, only you can decide.
What should I tell my child about his/her condition?
As soon as your child is old enough to understand, you should explain things
as clearly and simply as possible. Your child should never feel ashamed of
his/her medical condition. Many of us suffered terribly from the secrecy and
shame surrounding our intersexuality; our parents either refused to explain why
we were put through painful surgeries and/or fed hormones at puberty, or they
taught us that it was shameful and that we were never to speak of it. In some
places, it was common for hospitals and doctors to destroy the medical records
of intersex children, in order to prevent them from finding out how they were
"abnormal". However, most of us figured it out anyway. Honesty is the
best policy, and the only healthy basis for a parent-child relationship based
on mutual respect, trust and love, which is essential for imparting the kid a
solid foundation for leading an adult life that is not impeded by physical and
mental health issues, possibly up to disablement.
Keep your child's medical checkups regarding their condition to a minimum,
and chaperone to make sure that he/she is not used as a guinea pig or
educational display. Learn as much as you can about your child's condition, and
do not let yourself be made to feel stupid, incompetent, or incapable of making
decisions. When your child is approaching puberty, it might be best to
carefully discuss the possibilities and what they will entail. This might work
best on the framework of family therapy, preferably with a gender specialist.
Your child must be the final arbiter of what is or is not done to his/her body,
and your job is to discover and advocate for his/her choice.
Finally, we strongly suggest that you join a support group. You are not
alone, and neither is your child. Contact the Ambiguous Genitalia Parents
Support Network listed below to find out if there is a group in your area, or
if you should start one. You might also think about a support group for your
child, so that he/she can know that they, too, are not alone. It's a good thing
for them to meet adults with their condition who can reassure them about life.
Can an intersexual live a happy, fulfilled life?
Yes! Although no official studies have yet been done (we're all waiting for
them) our anecdotal evidence suggests that intersexual children who are raised
in a loving, supportive family with no surgical intervention until they wish
it, and with parents who do not make them feel ashamed, are well-adjusted and
happy, often with loving spouses/partners. (Other studies done on children with
other disabilities have shown that they child's level of adjustment depends
less on the severity or social obviousness of the disability and more on the
presence or absence of loving family support.) It's those of us who had more,
intervention, not less, who are more likely to have psychological and sexual
dysfunction today.
The parent of an intersexual has been blessed with a very special and gifted
child who requires a lot of patience and love. You will need a lot of courage
to stand up for your child's real needs, but you are the only advocates your
baby has who really care for them. We hope that in reading this, you will be
able to make decisions about your child's treatment that truly work for their
well-being and not some abstract illusion of social "normality".
Recommmendable Literature
Alexander, Tamara (1997): The Medical Management of Intersexed Children: An
Analogue for Childhood Sexual Abuse.
Barbin, Adélaïde Herculine (1978): Herculine Barbin dite
Alexina B. Présenté par Michel Foucault. Paris:
Éditions Gallimard 1978, reéd. 1993 (Collection Folio, 2470)
---- (1980): Herculine Barbin, being the recently discovered memoirs of a
19th century hermaphrodite. Intro. ed. by Michael Foucault. Transl. by
Richard McDougall. New York, NY: Colophon
Diamond, Milton (1997): Sexual Identity and Sexual Orientation in Children
With Traumatized or Ambiguous Genitalia. Journal of Sex Research 34/2:
199-222
Diamond, Milton/H. Keith Sigmundson (1997a): Commentary: Management of
Intersexuality: Guidelines for dealing with persons with ambiguous genitalia.
Archives of Pediatrics and Adolescent Medicine 151/10, Oct. 1997,
1046-1050; http://www.afn.org/~sfcommed/mdfnl.htm.
---- (1997b): Sex Reassignment at Birth: A Long Term Review and Clinical
Implications — Reply. Archives of Pediatric and Adolescent Medicine
151/10, Oct. 1997, 1062-164;
http://www.afn.org/~sfcommed/mdfnl.htm.
Dreger, Alice Domurat (1998): Hermaphrodites and the Medical Invention of
Sex. Harvard University Press
Ensel, Angelica/Verein Feministische Wissenschaft (1996): Nach seinem
Bilde — Schönheitschirurgie und Schöpfungsphantasien in der
westlichen Medizin. Bern: efef
Fausto-Sterling, Anne (1985): Myths of gender. Biological theories about
women and men. New York: Basic Books
---- (1988): Gefangene des Geschlechts? Was biologische Theorien
über Mann und Frau sagen. München/Zürich: Piper [germ.
transl. of Fausto-Sterling 1985]
---- (1993): The five sexes: why male and female are not enough. The
Sciences 33/2, March/April 1993, 20-26 [see also letters from the readers
in the July/August 1993 issue]
---- (forthc.): Building Bodies: Biology and the Social Construction of
Sexuality. New York, NY: Basic Books
Kessler, Suzanne J. (1990): The medical construction of gender: case
management of intersexed infants. Signs: Journal of Women in Culture and
Society 16/1, Autumn 1990, 3-26
---- (1998): Lessons from the Intersexed. Rutgers University Press
Kessler, Suzanne/Wendy McKenna (1978): Gender: an ethnomethodological
approach. Chicago, IL: Chicago UP/New York, NY: Wiley (Wiley-Interscience
Publications)
Schüßler, Marina/Kathrin Bode (1992): Geprüfte
Mädchen, ganze Frauen: zur Normierung der Mädchen in der
Kindergynäkologie. Bern: efef-verlag
Sgier, Irena/Verein Feministische Wissenschaft (1994): Aus eins mach zehn
und zwei lass gehn — Zweigeschlechtlichkeit als kulturelle
Konstruktion. Bern: efef
Recommendable Family Support Groups
H.E.L.P. (Hermaphrodite Education and Listening Post)
PO Box 26 292
Jacksonville, FL 32 226
USA
email: help@southeast.net
website: http://users.southeast.net/~help
EM Mermaids
Family Support Group for Children and Teenagers with Gender Health Issues
London, WC1N 3XX
UK
email: mermaidsuk@geocities.com
web:
http://www.geocities.com/WestHollywood/Village/2671/mermaids.html
AIS Support Group - Great Britain
website @ http://www.medhelp.org./www/ais
AIS Support Group US
c/o Sherri Groveman
4203 Genesse #103-437
San Diego, CA 92 117 - 49 50
USA
Tel.: 619 - 569 - 52 54
email: aissg@aol.com
AIS Support Group Canada
c/o Patricia Flora
PO Box 425
Postal Station C
1117 Queen Street West
Toronto, ON M6J 3P5
Canada
AISSG The Netherlands
Tel.: (038) 269845
AIS Selbsthilfegruppe
Postfach 7
71 201 Rottenburg am Neckar
Germany
AISSG Australia
Mary Russell
PO Box 3371
Logan Hyperdrome
Loganholme
Queensland 4129
Australia
Ambiguous Genitalia Support Network (AGSN)
428 East Elm St. #4/D
Lodi, CA 95 240 - 23 10
USA
Tel.: 209 - 369 - 0414
OUR KIDS
web: http://rdz.acor.org/lists/our-kids/
Kidnet
web: http://www.kidnet.de/
Kindernetzwerk e.V. für kranke und behinderte Kinder und Jugendliche in
der Gesellschaft
Hanauer Str. 15
63 739 Aschaffenburg
Germany
Tel.: +49 - 60 21 - 120 30
Fax: +49 - 60 21 - 124 46
Vaginoplasty Support Network (North)
c/o Ms Sheila Naish
Royd Well Counselling
35 Royd Terrace
Hebden Bridge, West Yorks HX7 7BT
UK
Vaginoplasty Network (South)
c/o Hilary Everett
Gynaecology Social Worker
Social Services Dept.
St. Bartholomew's Hospital
West Smithfield
London EC1A 7BE
UK
Addendum: A note on follow-ups
The declared aim of the Moneyan treatment protocol is: "The result of
all decisions should be a normal, well-adjusted child who will grow and develop
into a mature adult, confident of his or her own identity and capable of
achieving satisfactory sexuality and function." (Conte, Felix A. Melvin M.
Grumbach: Pathogenesis, classification, diagnosis, and treatment of anomalies
of sex. - In: De Groot, Leslie J. (ed.): Endocrinology, I-III. Philadelphia,
PA: Saunders ²1989/III: 1810-1847 (=chapter 109)). To get a picture of the
extent to which this is achievable, c.f. the following:
-
I Geiger/Sanchez (1982):
-
Summary
-
More than 20 girls with congenital AGS which were supervised by the
pediatric departement during the last 10 years are now checked systematically
for the present status of external genitalia. Most of them have passed one or
more surgical correction, but none of them presented a cosmetically or
functionally sufficient result. When the clitoris had been immersed beneath the
cutis in the age of two to four years, it had grown until the late puberty to
the extent of a thumb, causing discomfort especially during erection. In these
cases, partial or even total clitoridectomy is unavoidable. [...]
No comment necessary
-
II Möbus/Sachweh/Knapstein/Kreienberg (1993):
-
In 24 patients with Mayer-Rokitansky-Küstner syndrome we carried
out a post-operative follow-up examination. In the majority of cases, the
operation had yielded functionally satisfactory results. 20 out of 24 of the
patient collective now lead a healthy sexual life with an unimpaired emotional
and sexual responsiveness. Early and regular postoperative cohabitation is
vital for long-term success of surgical results and more important than regular
of the wearing phantom. A successful operation greatly increases the patient's
self-esteem, her feeling of being sexually attractive, and her self-confidence.
Despite geral satisfaction with operational results, several women voiced
criticism about inadequate perioperative psychological support. The patient's
legitimate need for psychological help and guidance must not be neglected. This
can take the form of regular discussions, in which detailed explanations about
the disorder are given and which must also cover the subject of infertility, a
cause of particular anguish in most women. This approach will contribute to
enhancing the women's emotional stability and help them to better cope with
their problems. It is our experience, that it is beneficial to include the
patient's partner in such counselling.
Alas a few interesting facts are not mentioned in the summary... like they
originally had 27 patients 3 of whom refused to take part in the follow-up
(p.126) and those with an unfavorable outcome have had surgery at age 16-17,
wheras the others had surgery at age 18-20 (p. 127). The note on post-op
split-up of r'ships is on p. 128. 3 had serious problems w/body-image (p. 129).
etc. etc.
-
III Lang/Neel/Bloemer (1973):
-
A new method of skin grafting of the artificial vagina in the operative
treatment of vaginal aplasia is described. The mesh-graft technique of Tanner
and Vandeput is used. The long-term results in 5 patients showed good healing
and the long-term dilatations with protheses became unnecessary.
Same politics of summary-writing here... The note on none of their patients
having done dilatation as they've been told is on p. 562.
The initial sections of the above FAQ essentially are based on Raven
Kaldera's flyer for parents of IS kids.
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