Parents of Intersexed Children FAQ Table of Contents

• 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

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" ). 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; .

---- (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;

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.mermaids.freeuk.com/gidca.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.

Additional FAQS include:

• Intersexuality Frequently Asked Questions
• Frequently Asked Questions from Non-Intersexed People

next: Frequently Asked Questions from Non-Intersexed People
~ all inside intersexuality articles
~ all articles on gender