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Laurence Rangecroft of the Royal Victoria Infirmary of Newcastle, U.K. published a paper in the latest issue of Archives of Disease in Childhood on behalf of the British Association of Paediatric Surgeons Working Party on the Surgical Management of Children Born With Ambiguous Genitalia, which has been meeting for the past several years. In the 3-page report, Rangecroft calls for full disclosure of information, true informed consent, and a more restrained use of surgical procedures to treat children born with intersex conditions. Here are some of the recommendations:
* Gender assignment should not be made hastily at least until after the child has been referred to the closest treatment center where s/he can be evaluated by the multidisciplinary team of specialists. The team will include "paediatric surgeons and/or paediatric urologists, neonatologists, and paediatric endocrinologists and their specialist nurses/support workers, geneticists, biochemists, psychologists, and gynaecologists."
* Psychological support for the patient and family "should be well integrated with medical input, easily accessible at the time of need, and provided by, on in consultation with, a specialized service."
* Parents must be made aware of the "possibility of non-operative management with psychological support for the child and family" before they can consent to early corrective surgery as part of the "fully informed consent."
* Clitoral shaft resection, while clearly an advance from complete clitorectomy, has not been proven to preserve sexual/orgasmic potential of the individual, and there is some emerging evidence to the contrary. Also, there is a "strong case" against clitoral surgery in lesser degrees of clitromegaly. Parents need to be fully aware that this is the case before proceeeding with this procedure.
* There is a strong case for delaying vaginoplasty, as it "confers no obvious benefit in a young girl." Parents need to be informed that long-term studies show that early vaginoplasty do not alleviate the necessity for sometimes major revisional surgeries later in life in majority of case before consenting to this procedure.
* There is a contradicting arguments for or against early gonadectomy in patients with complete androgen insensitivity syndrome (CAIS). Some physicians call for early gonadectomy to remove the risk of malignant change of the gonads, but the actual risk may be minimal and there may be medical benefits to keeping gonads until after the child hits puberty in terms of facilitating healthy bone maturation and body development.
* Vaginal lengthening through self-dilation in CAIS women is reported to be 85-90% successful, and should be attempted before considering surgical intervention.
* The surgical assignment of genetic males who are severely undervirilized due to partial androgen insensitivity syndrome, 5-alpha reductase deficiency syndrome, and other conditions to the female gender "should only be undertaken with considerable caution and following full multidisciplinary investigation and counselling of the parents."
* Dysgenetic and streak gonads should be removed because of the high risk of malignant change. "Any retained testis should be placed in a palpable position" for easier examination.
Source: Rangecroft L (2003). "Surgical management of ambiguous genitalia." Archives of Disease in Childhood. 88(9):799-801.
Posted by Emi on Sep 7, 2003