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Aphallia is a very rare condition summarized as the congenital absence of the phallus in a genetically and hormonally "normal" male child. Under Dr. Money's now-debunked theory that any child could be reared either as a boy or as a girl with appropriate surgeries and socialization, doctors traditionally instructed genetic males with aphallia to be raised as girls, simply because gonadectomy and vaginoplasty were easier to perform than phalloplasty. But now that we know we cannot rely on Money's theory, how should these children be raised? That is the question addressed in the recent issue of Pediatrics. (The discussion originally appeared earlier in Journal of Developmental and Behavioral Peditrics but we didn't notice it the first time. D'oh.)
Dr. Erica Eugster from Riley Hospital for Children in Indianapolis discusses possible treatment scenarios for the case of aphallia. First, there is the traditional protocol, which calls for surgically assigning the child as a girl and follow up with estrogen injection starting at puberty. Second, the child could be raised as a boy, possibly preserving his fertility; phalloplasty would be performed, although it is "technically difficult." Third, the "option promoted by patient-advocacy groups" (that's us!) is to "defer gonadectomy and genital surgery" whether the child is assigned male or female, until the child can participate in the decision-making in an meaningful way. Eugster however urges that gonadectomy be considered in the case of female gender assignment, because the presence of testes could stimulate further masculinization of the brain.
What is remarkable about this dialog is the refusal of each participating experts--Drs. David Sandberg and Tom Mazur from the Children's Hospital of Baffalo, Dr. Jorge Daaboul from University of Florida College of Medicine, and Dr. Eugster--to give simple answers. "In light of contemporary controversy," writes Eugster, few would hazard the assertion that there is an absolute 'right' or 'wrong' answer regarding optimal sex assignment in this case." According to Daaboul, "the current medical model with its focus on diagnosis and medical-surgical treatment does not assure the best possible outcome... The appropriate care model is one in which the focus is shifted away from the precise medical diagnosis and toward the parents' conception of [...] how they see their child's future in the context of their family and society."
The general consensus here is that there is no systemic way to ascertain any particular recommendation regarding the appropriate sex of rearing. Instead, Daaboul and others are urging physicians to facilitate case-by-case determination in terms of gender assignment through full disclosure of information, including those information that may be "arguably biased" (i.e. those coming from patient-advocacy groups) and with the assistance of experts in psychology and counseling.
Eugster points out that "a consistent source of dissatisfaction among adult intersexuals, even among those for whom the psychosexual outcome appears favorable, has been the lack of disclosure by medical professionals (and often parents) regarding their diagnosis and treatment." "The ideal time to establish a culture of full disclosure is in the initial discussions with parents," she writes.
We agree: what we need now is to end the culture of shame and secrecy that has been imposed on children with intersex conditions and their families, and transform it to the culture of full disclosure and respect for everyone. While long-term outcome studies are important, even in their absence we can begin improving the lives of intersex children and their families through honesty, respect and support.
Source:
Stein MT, Sandberg DE, Mazur T, Eugster E, Daaboul J. (2004). "A newborn infant with a disorder of sex differentiation." Pediatrics. 114(5):1473-1477.
Stein MT, Sandberg DE, Mazur T, Eugster E, Daaboul J. (2003). "A newborn infant with a disorder of sex differentiation." Journal of Developmental and Behavioral Pediatrics. 24(2):115-9.
Posted by Emi on Dec 30, 2004