Genital Surgery On Intersexed Children

letter - page 2

1. There is no medical reason to reduce the size of a large clitoris. Large clitorises do not cause illness or pain. The sole motivation for the surgery is the unproven belief that it may enhance psychological well-being. There is no medical reason to create or deepen a vagina in a pre-pubescent child. The sole motivation for such surgery is the unproven belief that it may ease parental discomfort now or that the decision would be traumatic for the patient to make later, so the surgery should be performed before she is able to participate in the decision.

2. The surgery is irreversible. Tissue removed from the clitoris can never be restored; scarring produced by surgery can never be undone. Setting potential and speculative "psychological" benefits aside, there no medical advantage or benefit to performing surgery now as opposed to later, when the child can make her own choice and when her gender identity is clearly established. "Surgery makes parents and doctors comfortable, but counseling makes people comfortable too, and it is not irreversible" (Schober 1998, p20).

There are, in fact, clear medical benefits to delaying the surgery. When she is grown, her genitals will be larger and thus easier for a surgeon to work on. One reason for poor surgical outcomes may be that scar tissue is negatively affected by the changes in size and shape that accompany normal growth and pubertal development; surgery performed after puberty would avoid that risk. It is likely that surgical techniques will have improved by the time she has grown; waiting will allow her to benefit from advances in technology.

There are many documented cases of people with her history who lived as adult women and were happy to keep their large clitoris intact, in some cases actually refusing surgery when it was offered (Fausto-Sterling 1993; Young 1937).

There is clear documentation that a significant fraction of children with her specific medical condition and history develop a male gender identity, and live as men during adulthood. If she lives as a man, she will be grateful that surgery was not performed without her consent.

Physicians in this case have asserted that the child can never live as a man, because her penis is never going to be sexually functional. But sexual function may mean different things to different people. The boy in the previous case, who was accidentally emasculated, chose to live as a man even though he had lost his penis. The men investigated in (Reilly and Woodhouse 1989) were able to have satisfying lives as men, with no impairment of sexual function, with small penises that would be judged "inadequate" according to the medical protocols used on intersex children. A small penis is capable of providing sexual arousal, genital pleasure, and orgasm. The video tape "I Am What I Feel To Be" (Fama Film A.G. 1997) presents interviews in Spanish with a number of people who were born as male pseudo hermaphrodites, raised female, and later changed to live as men. Both they and their partners describe their lives as sexually fulfilling, in spite of penises so small that they lived as girls until puberty (Fama Film A.G. 1997).

3. There is considerable evidence that genital surgery can cause harm, including such physical harm as scarring, chronic pain, chronic irritation, reduction of sexual sensation, and psychological harm. Indeed, apart from the harm specific to genital surgery, surgery is never without risk.

4. No significant data has been collected on long term outcomes. The belief that these surgeries provide any benefit at all is speculative and unexamined. Given the clear risk of harm, the Court is obligated to protect the child's human rights by declining to approve the surgery.

5. The very fact that the physicians in this case hesitate to perform surgery before operating indicates that they are aware that the surgery is risky and may cause immediate or future harm.

6. Surgeons argue that genital surgeries must be performed on intersex children in order to save them from feeling different from other children, or being marginalized by society. But many children grow up with physical differences which may cause them to be marginalized by society, yet we do not advocate using plastic surgery to eliminate all physical differences. For instance, children of racial minorities are often marginalized, teased, and even subject to violence. Yet few would condone using non-consensual plastic surgery during infancy to eliminate racial characteristics.

Prejudice against people with unusual genitals is culturally determined. Some cultures have high regard for people with intersex genitals (Herdt 1994; Roscoe 1987). As even Dr. Maria New, a pediatric endocrinologist who advocates early genital surgery, concedes, our own culture was much less prejudiced before medical intervention began. [During the European Middle Ages and Renaissance,] "Hermaphrodites were integrated quite forthrightly into the social fabric" (New and Kitzinger 1993, p10).

But some surgeons who advocate early genital surgery for intersex infants might consider surgical elimination of racial characteristics potentially acceptable. Dr. Kenneth Glassberg, a surgeon who heads the Urology Section of the American Academy of Pediatrics, was interviewed on the national television news show NBC Dateline. He said that it was unrealistic to ask people to be accepting of genital difference, because many people are unaccepting of racial difference (Dateline 1997). Yet the law addresses the problem of racism by trying to mitigate the power of racists to harm members of racial minorities, rather than by trying to eliminate the physical characteristics which mark members of racial minorities.

Likewise, in this case, if there is intolerance of physical difference, then the intolerance should not be addressed by using medically unnecessary, irreversible, potentially harmful plastic surgery to try to hide the physical difference without the patient's consent. This is particularly true for a physical difference that is not visible to others in the course of normal social interaction.

7. There is good evidence that adults would not choose clitoral surgery for themselves. Psychologist Dr. Suzanne Kessler has documented this by surveying college students (Kessler 1997). There are many adult intersex women who express regret and anger that genital surgery was imposed on them as children.

8. Worldwide medical thinking about surgical management of intersexuality has been strongly influenced by a case in which a boy whose penis was accidentally destroyed during circumcision, and who after being surgically reassigned and raised female, was reported to have had a successful adjustment. However, it is now known that, like the previous case of accidental emasculation which the Court is considering, the female reassignment was a disaster (Diamond and Sigmundson 1997a). The patient now lives once again as a man, and reconsideration of this case is causing experts to assert that early genital surgery requires the informed consent of the patient (1997b; Diamond and Sigmundson 1997b; Dreger 1998 forthcoming-a). "I recommend that genital reconstruction be delayed until the individual is competent to decide for himself or herself how this should best be fashioned" (Diamond 1996). "This damage [due to surgery] may be something a patient is willing to risk, but that is a choice he/she should be able to make for him/herself" (Fausto-Sterling and Laurent 1994, p10).

9. A safer alternative is clearly available, and is endorsed by credible experts.

Sex researcher Milton Diamond of the University of Hawaii Medical School and psychiatrist Keith Sigmundson of the University of British Columbia, based upon their research of intersex management, provide clear recommendations for how doctors can best serve intersex children. They recommend that the parents' emotional difficulties about their child's intersexuality be treated by providing counseling for the parents, that ongoing counseling and honest information be provided to the intersex child in age-appropriate fashion as she grows, and that early genital surgery be avoided because it is irreversible and potentially harmful. "[The parents] desire as to sex of assignment is secondary. The child remains the patient." "Most intersex conditions can remain without any surgery at all. A woman with a phallus can enjoy her hypertrophied clitoris and so can her partner. Women with [intersex conditions] who have smaller-than-usual vaginas can be advised to use pressure dilation to fashion one to facilitate coitus; a woman with [an intersex condition] likewise can enjoy a large clitoris." "As the child matures there must be opportunity for private counseling sessions ... the counseling should ideally be done by those trained in sexual/gender/intersex matters" (Diamond and Sigmundson 1997b) .

Pediatric urology surgeon Dr. Justine Schober, in her review of clitoral reduction and vaginoplasty, concludes that "Surgery must be based on truthful disclosure and support decision-making by parents and patient. . . . Our ethical duty as surgeons is to do no harm and to serve the best interests of the patient" (Schober 1998).

Narrative ethicist Dr. Alice Dreger recommends that intersex patients be allowed to choose surgery only with full informed consent of the patient, and that counseling and peer support be made available to parents, family, and patient (Dreger 1997b).

10. Given the fact that genital surgery is not medically necessary, that it is irreversible and potentially harmful, that there is growing controversy among medical intersex specialists, and that the child can always choose surgery later if she wishes, to impose surgery now would violate the first principle of medicine: "Primum, non nocerum" (First, do no harm).

11. Many of the factors which determined the Court's decision in the case of the emasculated boy apply in exactly the same way in the present case. Just as in that case, there is no urgency to perform the surgery as evidenced by the fact that three years have now passed since the diagnosis and without surgery. Just as in that case, the child is unable to give the informed consent which is necessary before such an important and life-altering decision can be made for her. Just as in the previous case, there is no proof that this surgery would provide any benefit at all.

12. BOTH THE NUREMBERG CODE AND BASIC PRINCIPLES OF HUMAN RIGHTS LAW PROHIBIT SUBJECTING A CHILD TO INVOLUNTARY, IRREVERSIBLE, AND MEDICALLY UNNECESSARY GENITAL SURGERIES.

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