History of Intersex Surgery - Outcomes and Statistics

Outcomes and Statistics

Regardless of the representativeness of the advocacy groups, the doctors began to listen. Within a short time re-evaluation of intersex management was a major topic in the journals and the meetings of the pediatric endocrinologists and urologists. There was no international "registry" of genital reconstructive surgery. Most cases of this type of surgery were being carried out in a relatively small number of centers. Several of the larger institutions embarked on individual and collaborative retrospective outcome studies, attempting to contact all individuals treated as children in their institutions since the 1960s. A large, collaborative, retrospective survey, the North American Task Force on Intersexuality, was organized, with input from patient advocates.

Johns Hopkins Hospital, the institution that was arguably most responsible for the intersex management paradigm of the previous 4 decades, and the principal target of activist criticism in the late 1990s, was also the first to publish a series of outcome studies. Between 2000 and 2004, the pediatric psychologists, endocrinologists, urologists, and gynecologists associated with Hopkins reviewed all cases of complete androgen insensitivity (Wisniewski, 2000 and 2002), micropenis (Wisniewski, 2001 and 2002), XY ambiguity (Migeon, 2002a and 2002b), XY cloacal exstrophy (Reiner, 2004), and congenital adrenal hyperplasia (Wisniewski, 2004) seen as children and now grown, whether operated upon or not. They attempted to locate and contact all of the individuals to ascertain outcomes by questionnaire, interview, and examination. With a subsequent questionnaire, they asked these people their opinion of their own management and some of the recommendations of recent years (Meyer-Bahlburg, 2004).

To estimate how many major genital reconstructions were performed over approximately the first 25 years of traditional management at North America's first and largest program for intersex surgery:

• 134 XX infants with virilizing congenital adrenal hyperplasia raised as girls. About 90% had had surgery in childhood.
• 20 XY infants with completely female genitalia due to complete androgen insensitivity syndrome, raised as girls. All had gonadectomy; some had vaginoplasties.
• 6 XY infants with completely female genitalia due to Swyer syndrome, raised as girls, generally diagnosed in adolescence. Most had surgery, usually exploration and gonadectomy.
• 114 XY infants with severely ambiguous genitalia due to a variety of conditions; 64 were raised as males and 50 were raised as females. All had reconstructive surgeries.
• 43 XY infants with micropenis; 31 were raised as males, 12 were reassigned as female and underwent reconstructive surgery.
• 14 XY infants with cloacal exstrophy raised as females; all had surgical reconstruction.

Perhaps the most striking findings from these reports are:

1. the relatively small numbers of patients who actually underwent the more controversial procedures even in one of the largest centers in the world
2. the relatively high proportion of former patients who were located and willing to participate
3. the small differences in terms of outcomes, problems, and satisfaction between groups of people with the same conditions treated very differently.

Exact numbers of patients at other large centers have not been published, but few could have rivaled these numbers. In the early 1980s there were less than 20 children's hospitals in North America with similarly-sized pediatric endocrine clinics, and most had smaller referral areas.