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Controversy 

by Erin Anthony

In recent months there has been much debate about the appropriateness of early genital surgery for genital anomalies as well as controversy over the term “intersex.”  Those of you who read and participate on the CAH message board are no strangers to these topics, and many of you have contacted CARES about both.

As a support organization, it is CARES mission to support its members in any way possible.  It is not our role to say whether early surgery for girls born with genital anomalies is right or wrong, only to provide the best, most comprehensive information available.  We rely on our medical advisors and the most respected literature, such as the LWPES Consensus Statement on 21-OH Deficiency, for the information we distribute.  As it is, both of these sources currently recommend surgery between 2-6 months of age because it is technically easier, cautioning that extreme conservatism be exercised when considering clitoral reduction because of the potential loss of sexual sensation.

While following these guidelines, we also recommended that no surgery be done until: 1) the child is medically stable; 2) the parents are fully informed of the risks and benefits;  and 3) an expert surgeon is found.  Often, this takes longer than the recommended time frame.

Ultimately, the decision for or against early surgery is intensely personal, only to be made by the parents in close conjunction with the physician,  and not to be rushed. Whatever they choose, parents must be comfortable and confident in their decision.  It is important also to recognize that social and cultural conditions vary widely and each family is different.  What may be acceptable for one family is often unheard of by another.            

Much of  the conversation about surgery has been conducted by intersex groups, such as ISNA, who choose to include CAH as an “intersex” condition.  

Use of the word intersex is itself being debated, and most people with CAH have rejected it entirely.  An umbrella term, the word carries with it a certain amount of stigma and ambiguity and many want it phased-out—a point not lost on intersex advocacy groups. In fact, in two handbooks due out shortly from ISNA, intersex has been avoided entirely, using instead the terminology Disorders of Sexual Differentiation (DSD).

CAH is a disease with several forms, only one of which, classical CAH, could even be loosely considered an “intersex” condition.  Even then, only females are affected by genital anomaly and to widely varying extents.

Again, it is not our role to decide who is right or wrong, only to support the CAH community in the best way that we can.

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