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c h a p t e r e i g h t To Cut or Not to Cut? A Surgeon’s Perspective on Surgically Shaping Children Jeffrey L. Marsh, M.D. I have been privileged to participate in The Hasting Center’s Surgically Shaping Children project in two roles: narrowly, as the surgical expert for the specific discussion of congenital craniofacial anomalies (that is, birth defects of the skull and/or face), and,more generally,as a representative of surgeons and surgery at the working group’s final summation meeting. This chapter has developed out of my presentation at that final meeting, but necessarily includes some of the material from my earlier presentation to provide a richer context. My initial presentation as an “expert witness” was much simpler for me, since I was introducing to an intelligent (if untutored) audience information about what I have been doing for the past twenty-five years. My second presentation was much more challenging, in that it was a novel topic for me and it required me to speak at once about all three clinical conditions considered by the working group: short limbs, ambiguous genitalia, and craniofacial deformity. Furthermore, the response of some members of our working group to a fundamental principle of contemporary care for congenital craniofacial deformities caused me to examine why I do what I do and whether the assumptions that my professional behavior rest on are valid. This principle is that the goal of treatment is to minimize the stigmata of the deformity so that the individual can enter adult life as if the deformity had not happened. Before the group discussion of my presentation, I had not appreciated the tension between the goal of making a child look more normal and the goal of affirming a wide variety of human appearance. At the meetings I noticed that at least three positions were articulated: (1) we should use surgery to normalize individuals, that is, to make their anatomy more closely resemble that of the very large majority of the population; (2) we should change the opinions of others to affirm diversity and defer surgical alteration until the affected individual is old enough to give informed assent/consent; (3) we should find some combination of (1) and (2). Over the past nine months, I have reflected on these positions and those reflections stimulated this chapter. Comparing Surgeries for Cleft Lip and Palate, Ambiguous Genitalia, and Short Limbs American society has become increasingly aware of and sensitive to consequences, both unintentional and intended, of labels—so much so, that a novel abbreviation, “pc”(“politically correct”),has become commonplace in conversation,media,and litigation . In my opinion, based on discussions with health care professionals and laypersons,there is a fundamental difference between the linguistic formulation craniofacial deformity and that of short limbs and ambiguous genitalia. In craniofacial deformity , the noun (deformity) is a pejorative term, which is modified by a neutral anatomic designator adjective (craniofacial). Alternative nomenclature in current usage for such a condition—for example, craniofacial disorder, craniofacial anomaly, craniofacial birth defect—does not avoid the pejorative connotation. Deformity, disorder , anomaly, and birth defect evoke a set of responses that includes a need for correction , repair, fixing as well as undesired negativity. In contrast, limbs and genitalia are nonpejorative anatomic nouns. Their descriptive adjectives, short and ambiguous, respectively, may have pejorative connotations but they are not necessarily pejorative. Short usually did not evoke a set of responses that includes a need for correction, repair ,fixing as well as undesired negativity among the people I spoke with,though ambiguous sometimes did. Englishdoesnothaveaneutraldescriptorforthetypeof craniofacialconditionsthat I evaluate and provide care for. Nor does it have an unmodified noun or single adjective that includes the condition such as dwarf for people with short limbs or the recent neologism intersexed for people with ambiguous genitalia. These comments are not meant to imply that short and ambiguous cannot negatively affect perception of a condition , but rather to note that there seems to be a difference in degree and consistency of response when the noun is necessarily pejorative. That is, whereas the label craniofacial deformity includes a necessarily pejorative noun, the labels short limbs and ambiguous genitalia include adjectives that can be—but are not necessarily—pejorative. The discrepancy in terminology between craniofacial deformity and short limbs or ambiguous genitalia may reflect the fact that a facial difference is evident at birth and, if concealed through...

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