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When John Became Joan
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WhenJohn Became Joan J o h n ’ s life took a tragic turn when his penis was accidentally ablated by cautery during a routine phimosis repair. He was only 8 months old. Experts advised the parents to raise the child as a girl because it would be more feasible to surgically fashion a good vagina than it would a good penis. After an orchidectomy and surgery to create a rudimentary vagina, John became Joan. This classic story of sex reassignment has been followed in the professional literature and the lay press for more than 20 years. But the most recent chapter is the most startling. Joan rejected living as a girl when she entered puberty, switched back to living as a boy, and was once again called John. John is now 30-something, happily married, and described by those who know him as a “mature and forward looking man with a keen sense of humor and balance” (Diamond & Sigmundson, 1997, p. 302). The long-term follow-up of John’s case was reported last year in the Archives of Pediatric and Adolescent Medicine. It reads like a made-for-TV script but is the true story of one child’s triumph over loneliness, humiliation, and confusion. Equally important, the story reverses two beliefs widely held by clinicians: (a) that children are psychosexually neutral at birth and (b) that healthy psychosexual development depends on the appearance of the genitals. These beliefs have led physicians to recommend that the choice of gender for infants with ambiguous or traumatized genitalia should be based on anatomy rather than on chromosomal karyotype (Diamond & Sigmundson, 1997). Drs. Milton Diamond and Keith Sigmundson, who reported the long-term outcome of John’s case, argue that there is no known case where a 46-chromosome, XY male has easily and fully accepted life as a female, regardless of medical intervention. They offer a new guideline: Any 46-chromosome, XY infant born normal and with a normal nervous system should be raised as a male because the evidence is overwhelming that psychosexual orientation is not neutral a t birth. Infants are born with a predisposition t o interact with others as either a male or a female. In addition, Diamond and Sigmundson recommend that any genital surgery, al-
JanuarylFebruary 1998
though difficult, should be compatible with the infant’s biologic predisposition. The current model of treatment for children with ambiguous genitalia also has been questioned and challenged by lay groups such as the Intersex Society of North America (ISNA). The ISNA is a peer support, education, and advocacy group founded and operated by intersexuals, that is, “individuals who are neither typical males nor typical females” (ISNA, 1994, p. 1). The ISNA recommends a new model of treatment for intersexual infants. The basic principle underlying their model is to first d o no harm by avoiding unnecessary surgery on infants and children. A second principle is to provide in-depth counseling for the entire family of a newborn intersexual. This counseling should be with a mental health professional who has special competence in sex theory and therapy. Intersexual children, when old enough, should be informed of their status. This disclosure should be complete and open, and the child should be referred to a peer support group. Then pubescent children should be helped to explore the medical and surgical options available to them. Finally, the ISNA recommends that medical intervention should be carried out no earlier than puberty and only with the informed consent of the child. . For more information and different views on the management of children with ambiguous or traumatized genitalia, read the article by Leslie Parker in this issue of J O G N N ; pull the report by Diamond and Sigmundson (1997) from the library; and then download the ISNA’s recommendations for treatment of intersex infants, along with a complete bibliography on intersexuality, from the Internet (http://www.isna.org).
Karen B. Haller, RN, PhD Editor REFERENCES Diamond, M., & Sigmundson, K. (1997).Sex reassignment at birth. Archives of Pediatric and Adolescent Medicine, 151, 298-304. Intersex Society of North America. (1994). Recommendations for treatment: Intersex infants and children. San Francisco, CA: Author.
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WhenJohn Became Joan J o h n ’ s life took a tragic turn when his penis was accidentally ablated by cautery during a routine phimosis repair. He was only 8 months old. Experts advised the parents to raise the child as a girl because it would be more feasible to surgically fashion a good vagina than it would a good penis. After an orchidectomy and surgery to create a rudimentary vagina, John became Joan. This classic story of sex reassignment has been followed in the professional literature and the lay press for more than 20 years. But the most recent chapter is the most startling. Joan rejected living as a girl when she entered puberty, switched back to living as a boy, and was once again called John. John is now 30-something, happily married, and described by those who know him as a “mature and forward looking man with a keen sense of humor and balance” (Diamond & Sigmundson, 1997, p. 302). The long-term follow-up of John’s case was reported last year in the Archives of Pediatric and Adolescent Medicine. It reads like a made-for-TV script but is the true story of one child’s triumph over loneliness, humiliation, and confusion. Equally important, the story reverses two beliefs widely held by clinicians: (a) that children are psychosexually neutral at birth and (b) that healthy psychosexual development depends on the appearance of the genitals. These beliefs have led physicians to recommend that the choice of gender for infants with ambiguous or traumatized genitalia should be based on anatomy rather than on chromosomal karyotype (Diamond & Sigmundson, 1997). Drs. Milton Diamond and Keith Sigmundson, who reported the long-term outcome of John’s case, argue that there is no known case where a 46-chromosome, XY male has easily and fully accepted life as a female, regardless of medical intervention. They offer a new guideline: Any 46-chromosome, XY infant born normal and with a normal nervous system should be raised as a male because the evidence is overwhelming that psychosexual orientation is not neutral a t birth. Infants are born with a predisposition t o interact with others as either a male or a female. In addition, Diamond and Sigmundson recommend that any genital surgery, al-
JanuarylFebruary 1998
though difficult, should be compatible with the infant’s biologic predisposition. The current model of treatment for children with ambiguous genitalia also has been questioned and challenged by lay groups such as the Intersex Society of North America (ISNA). The ISNA is a peer support, education, and advocacy group founded and operated by intersexuals, that is, “individuals who are neither typical males nor typical females” (ISNA, 1994, p. 1). The ISNA recommends a new model of treatment for intersexual infants. The basic principle underlying their model is to first d o no harm by avoiding unnecessary surgery on infants and children. A second principle is to provide in-depth counseling for the entire family of a newborn intersexual. This counseling should be with a mental health professional who has special competence in sex theory and therapy. Intersexual children, when old enough, should be informed of their status. This disclosure should be complete and open, and the child should be referred to a peer support group. Then pubescent children should be helped to explore the medical and surgical options available to them. Finally, the ISNA recommends that medical intervention should be carried out no earlier than puberty and only with the informed consent of the child. . For more information and different views on the management of children with ambiguous or traumatized genitalia, read the article by Leslie Parker in this issue of J O G N N ; pull the report by Diamond and Sigmundson (1997) from the library; and then download the ISNA’s recommendations for treatment of intersex infants, along with a complete bibliography on intersexuality, from the Internet (http://www.isna.org).
Karen B. Haller, RN, PhD Editor REFERENCES Diamond, M., & Sigmundson, K. (1997).Sex reassignment at birth. Archives of Pediatric and Adolescent Medicine, 151, 298-304. Intersex Society of North America. (1994). Recommendations for treatment: Intersex infants and children. San Francisco, CA: Author.
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