It was considered a medical triumph 33 years ago when John became Joan.
John was 8 months old when his penis was accidentally destroyed during minor surgery to correct a problem with the foreskin. Doctors advised his horrified parents to raise the child as a girl, and surgery to create female anatomy followed shortly thereafter.
The 1964 operation made headlines around the world. It also became the standard of practice in cases involving freak accidents like John's or when children are born with severely deformed genitals, a rare defect occurring in about 1 out of every 100,000 births.
Now, however, two doctors involved with John's case from the start have tracked the results, and they say the decision to raise John as a girl was all wrong.
John, who reverted to being a male as a teenager, had always felt he was a boy, even though he was called Joan, wore dresses and had female genitals, say the authors of the report, published today in the Archives of Pediatric & Adolescent Medicine.
In addition to calling into question the practice of sex reassignment, as the treatment is called, the case yields valuable insight about what it means to be male or female. It also provides stark evidence that a person's brain predetermines sexual identity--not one's anatomy or social environment, experts say.
"The question this case doesn't answer but lends data to is: What is the origin of gender identity? How do we know we are a girl? How do we know we are a boy? And when do we know it?" says Dr. William Reiner, a child psychiatrist at the Johns Hopkins Hospital in Baltimore, where John was treated. "John, in spite of being raised as a girl and being treated with hormones and estrogen, said, 'Forget it. I'm a boy.' "
Children who undergo sex reassignment provide a unique opportunity to explore the complexities of sexuality, says Reiner. While only one case, John's story is particularly strong testimony that the roots of sexual identity lie deep inside the brain, as more recent scientific studies have attested.
Even as a child, Joan, who had not been told what had happened, said she "felt like a trapped animal."
That was not what doctors would have predicted three decades ago, when notions of sexuality were much different. In proposing the sex-change surgery, doctors told John's parents that infants were sexually neutral at birth and that children learned their gender as they grew up and as hormonal influences kicked in at puberty.
"The teaching has been to convert these children because you can surgically construct a sexually functioning female but you can't surgically reconstruct a child to function as a male," says Reiner, who wrote an editorial accompanying the report.
Moreover, many experts believed that a male child could not grow up psychologically healthy without a penis--an assumption not supported by data, Reiner says. Doctors have also assumed, until the past decade or so, that a child will reflect its upbringing.
"Doctors haven't been doing this willy-nilly. They have tried to do what they think is the right thing," says Milton Diamond, co-author of the report and an expert in anatomy and psychology at the Pacific Center for Sex and Society, University of Hawaii-Manoa. Diamond served as a consultant to the British Broadcasting Co. in its coverage of the case in the 1960s and 1970s.
Indeed, the surgery on John was followed by a host of reports on the case touting it as a success. A 1973 Time magazine article noted: "This dramatic case . . . provides strong support . . . that conventional patterns of masculine and feminine behavior can be altered. It also casts doubt on the theory that major sex differences, psychological as well as anatomical, are immutably set by the genes at conception."
The case was quickly written into textbooks on pediatrics, psychiatry and sexuality--where it remains today--as an example that gender should be based on an infant's anatomy, not on chromosomes or the individual's feelings about his or her sexuality.
"The case led to a lot of excitement that this could even be done," Reiner says. "It was a very difficult clinical situation that could now be handled. It created a lot of enthusiasm and, probably, relief in the medical world."
The case received little more attention, however, until the retrospection published today, which is heartbreaking in its portrayal of John's and his family's suffering.
The article is based on interviews in 1994 and 1995 with John, his wife and his mother. According to Diamond, John wanted his story told, although he requested the use of the pseudonyms John and Joan.
The article suggests that the sex reassignment was wrong from the outset.
John's mother recalled: "As soon as he had the surgery, the doctor said I should now start treating him as a girl, doing girl things, and putting him in girl's clothes. But that was a disaster. I put this beautiful little dress on him . . . and he [immediately tried] to rip it off. I think he knew it was a dress and that it was for girls and he wasn't a girl."
As a girl, Joan rejected almost everything feminine. When her twin brother refused to share his toys, Joan saved her allowance and bought herself a toy truck. She began to suspect she was a boy around the ages of 9 to 11.
"There were little things from early on," John recalled in the 1994-'95 interviews. "I began to see how different I felt and was from what I was supposed to be. But I didn't know what it meant. I thought I was a freak or something. . . . I looked at myself and said I don't like this type of clothing, I don't like the types of toys I was always being given. I liked hanging around with the guys and climbing trees and stuff like that, and girls don't like any of that stuff. I looked in the mirror and [saw] my shoulders [were] so wide. I mean, there [was] nothing feminine about me. I [was] skinny, but other than that, nothing. But that was how I figured it out, but I didn't want to admit it. I figured I didn't want to wind up opening up a can of worms."
Life became miserable for Joan as she neared puberty. She was given estrogen, which made her feel awful. Despite being a nice-looking girl, her voice and movements were strange. So compelling were her feelings of maleness, Joan even attempted to stand to urinate. She was teased mercilessly by other children about her odd looks and behavior.
She continued to be seen by a team of experts at John Hopkins and, at 14, told her endocrinologist that she suspected she was a boy. The team, alarmed by her threats of suicide, discussed conversion to being male with Joan and her family.
Joan gladly embraced the suggestion, began taking male hormone shots and completed a mastectomy and phallus construction by 16. She learned the truth shortly thereafter in a tearful discussion with her father.
"John said, 'All of a sudden everything clicked. For the first time, things made sense and I understood who and what I was,' " note Diamond and co-author Dr. H. Keith Sigmundson. (Sigmundson, who now works at the Ministry of Health in Victoria, Canada, supervised John's case at Johns Hopkins and kept in contact with the family over the years.)
The family rejected doctors' advice to relocate upon Joan's switch to John. And after some initial sensational reaction, John's peers rallied around him. He developed into a muscular, good-looking young man who attracted girls. While the surgery to create male anatomy was only partially successful, John married at 25 and adopted his wife's children.
Diamond and Sigmundson describe him now as a well adjusted person with a good sense of humor. He is bitter about what happened to him, Diamond says, but has thrived with the love and support of his family and friends.
In his recent interviews, John told the doctors that he hopes what happened to him will not be repeated in other children.
Today's paper should rekindle a discussion of what approach to take with infants born with genital abnormalities, as well as cases of sex chromosome abnormalities, gender identity disorders and metabolic adrenal or testicular errors--all conditions in which sexual identity and orientation can be unclear.
"We need to have a strong discussion on what are our data. Are we doing the right thing [with sex reassignment]? John gives us reason to pause and question what we're doing," Reiner says.
On a more practical note, John's story sheds some light on the roots of gender identity and sex roles, experts say.
"This case is another brick in the edifice of understanding sexual identity and showing that we are born with most of these feelings. The largest sex organ is between the ears," Diamond says.
But conclusions on how to deal with children who are hermaphrodites, pseudohermaphrodites or other conditions in which gender is blurred should not be based on any single case, says Dr. Francine Ratner Kaufman, an endocrinologist at Childrens Hospital Los Angeles and associate professor of pediatrics at USC. But, she says: "I think we've come back to stressing the importance of the biological. So [the paper] is important data for us to have who deal in this field and have to assign gender."
Reiner is in the process of analyzing data from a group of adolescents at John Hopkins who are males being raised as females. Among seven of these children, he says, two have reverted to being males and testing on the other children indicates a more masculine sexual identity.
In their paper, Diamond and Sigmundson advocate postponing sex reassignment surgery in infants in favor of counseling to eventually determine the child's feelings about his or her gender.
"In cases where the genitals are traumatized, I believe it's never appropriate to change sex, because you haven't changed the brain," Diamond says.
But Kaufman says that approach may be unpractical in cases where infants are born with ambiguous genitalia. Parents often want, and need, a quick resolution to the problem.
"In newborns, the problem should be fixed as soon as possible," she says. "The families are devastated. And I think we understand enough, biologically, to come up with a good resolution."
Still, there are no right and wrong answers in how to medically assist individuals whose anatomy, behavior or feelings don't match traditional constructs of what is male or female, says Reiner, noting that the study of sexual orientation is "only in the infancy of scientific understanding."
"These patients provide us an opportunity to further explore the various contributions to gender role and identity," he says. "In the end it is only the children themselves who can and must identify who and what they are. It is for us as clinicians and researchers to listen and learn."