Imagine for a moment that you are a family doctor, and you have just delivered the first-born child of a young couple. As the baby yelps its first cry of freedom and the nurse tends to the mother, you inspect the child’s genitals to answer what you know will be the family’s next question: “Is it a boy or a girl?” You hesitate and answer, “I can’t tell.”
As the doctor, you have delivered an intersexed child, a child with biologically male and female sexual features. Such children, born with ambiguous genitals, make up about one in every two thousand to four thousand births. What do you do now?
If this happened just a decade ago, the doctor would offer a relatively stock response. Doctors had been taught in medical school to make their decisions based on the length of the penis. The child is called a boy if it is longer than an inch. If shorter, the doctor typically recommended that the genitals be operated on to appear as a girl’s. After designating the child a girl, regardless of its actual sex, doctors would tell the moms to raise the child as such. A similar course was followed with children who were biologically female but born with a masculine-looking clitoris. Doctors typically recommended surgery to provide the “correct” female look. “Everything will be all right,” the parents were told. Most doctors saw these procedures as simple and appropriate solutions. They might not even tell the parents of the procedures if the parents seemed unable to understand the complicated issues involved. Most people believe that everyone is born as one of two “types,” male or female. But the exception is far more common: more than one in every hundred newborns has an intersexed condition. Infants are born with many varieties of intersexuality, many of which are not signaled by ambiguous genitals. These infants look just like their brothers and sisters. Their situations may not become clear until puberty or adulthood. And for many, the precise intersex situation never becomes clear without genetic, anatomical. hormonal, or other tests.
Typically, people have twenty-three pairs of chromosomes—bundles of DNA material—that determine sex and other traits. Most males pair a Y chromosome with au X chromosome. Females pair two X chromosomes. But some infants are born with extra sex chromosomes such as XXY or XXXYY. Intersexed children can be born with both one testis and one ovary. They can he born with the genitals of the opposite sex. Some children appear to be females at birth and then switch to look like males at puberty.
For reasons of privacy, this reality has rarely been discussed outside the context of medicine and biology. Physicians that treat children with intersex characteristics have found it easier to gloss over any biological discussion with the parents and concentrate on medical management. Until recently, the conventional approach had been set five decades ago when a Johns Hopkins University psychologist argued that humans were psychosexually neutral at birth, so it didn’t matter whether infants were raised as boys or girls. That view was based on a study of how he interpreted people with “differences of sex development”—or DSD, the now-preferred term for intersex conditions—fared.
Although it was believed that an infant could adapt to either sex, three practices were encouraged to facilitate sex assignment. First, surgery was performed to correct any sexual ambiguity. Second, the child was not told of the ambiguity, surgery, or assignment of gender. Finally, the child was brought up consistently as whatever gender was assigned. Because it was easier to fashion a female-appearing set of genitals than a functioning penis, male infants were often reassigned as girls. Many thousands of people around the world have received such treatments, and genital surgeries on infants and children continue today.
I have studied this topic for many years and for a host of reasons believe that this approach is faulty and should be changed. First of all, these practices can deny the inherent male and female characteristics of the infant, regardless of the external ambiguity. They also assume a neutral personality in the infant that would accept the “pink” or “blue” world in which the child is raised. Most significant, these actions deny a voice to the individual, who is a helpless infant at the time. Today, many intersexed adults are angry about their infant surgery and their loss of genital sensitivity, and not a few are aghast that a sex was assigned to them that was contrary to their nature. Many of these individuals have subsequently switched gender.
This formerly private world of doctors and parents became more public in the late 1990s. At that time, in 1998, I offered evidence to the American Association of Pediatrics that these practices for intersex conditions were on shaky ground, both biologically and ethically. I proposed three changes:
- “There should be a general moratorium on sex assignment cosmetic surgery when it is done without the consent of the patient.” Such surgery can sometimes he justified, but without real evidence of the long-term result we should follow a golden rule of medicine, “First do no harm” (Primum non nocere).
- “This moratorium should not be lifted unless and until complete and comprehensive retrospective studies are done and it is found that the outcomes of past interventions have been positive.” We still need to gather evidence and see if and when this practice is appropriate. The negative cost of ill-advised surgeries and sex reassignments is very high.
- “Efforts should he made to undo the effects of past deception and secrecy.” Usually, parents and physicians concealed the surgery and treatment from the child in youth and in adulthood. They feared the information would be traumatic. Almost invariably, however, the maturing child learns about the deception. The trust in the doctor and family is damaged, and the DSD adult is unprepared to approach the medical condition.
These three proposals stirred a reassessment in the medical profession. Research on adults who had such surgeries has expanded, but some is problematic. Many doctors do not want to report negative findings, so such research is better done by neutral investigators. For the most part, physicians have also said a moratorium on infant surgery is unrealistic because parents insist that their children look normal. Parents don’t want their son or daughter to be teased as a child or ridiculed as an adult and are themselves embarrassed to explain their child’s unusual anatomy.
Unfortunately, many parents have been unfazed by the explanation that these surgeries can lead to a loss in their child’s adult erotic sensitivity and even loss of orgasmic abilities. Fortunately, physicians are becoming more honest about the intersex condition and its management. This has been partly prompted by the possibility of lawsuits contending that a procedure was conducted without fully informed consent.
Despite some inevitable family difficulties, intersex conditions have become far more open socially and medically. Although medicine still tends to see intersex conditions as disorders or errors of development, among the intersex community itself these conditions are more often viewed as livable “varieties” or “differences”of life. New treatment guidelines since 1998 have adopted parts of the three recommendations. Sexual reassignment is done with far more caution now, more research is coming forth, and doctors are using more candor and honesty with parents and families.
The Politics of X and Y
A new politics of the intersex condition may be emerging as doctors recognize, on one hand, that the only life-threatening case at birth is “congenital adrenal hyperplasia,” while on the other hand, some pro-family groups want X and Y identification on marriage certificates. One legislative proposal in California would give marriage licenses only to couples with XY and XX chromosomes. In Australia, a man with XXY chromosomes seeks an official marriage as a person declaring himself a man and women combined.
Nevertheless, the changes have not gone far enough. I believe every child with DSD should receive a full diagnostic investigation to determine the cause of his or her intersex condition. This diagnosis should guide the physician, rather than the size or shape of any phallus, in directing how the child should best be reared as a boy or girl in accordance with the most likely future wish of the child as an adult. And I still believe that infant cosmetic surgery should be avoided.
Despite the best physician care and parental rearing, the intersexed child’s personality and gender display might be unique and unexpected. A person’s most basic, natural character cannot easily be programmed out of existence, even by socialization, hormone administration, psychiatry, and surgery. The individual’s maturing brain and developing personality will determine how he or she should live. Regardless of how originally assigned, some will choose to live as men, some as women. Some will elect to live proudly as intersexed individuals. And in all cases, counseling of the DSD individual and family is encouraged to smooth life’s path.
Just as wars are too important to be left solely to generals, the future sexual life of children is too important to be left solely to physicians and parents. Often the needs and concerns of parents are different from those of their adult children. If any surgery is to take place at all, the mature grown child can determine what, where, and when. The beliefs and comfort of the parents or physicians, while well meaning, should come second to those of the adult intersexed individual. Yes, we have come far in the understanding and management of intersex conditions. There is still a ways to go.