Mastectomy, not mastectomy

The “Ashley-X” or “Pillow Angel” case received a great deal of attention and was the subject debate over the last two years. The case received initial attention in October 2006, when Gunther and Diekema published a clinical account of Attenuating growth in children with profound developmental disability including with what they described as “the ethical debate.” A few moths later, early in 2007, attention to the case became intense after CNN and other major media source picked up the story. This post deals with one aspect of the story that was left out of the original report, the bilateral radical mastectomy performed on Ashley, and asks why the authors failed to mention it.

From a personal perspective, I was shocked when I first heard that a mastectomy had been performed on this child. I was also puzzled and embarrassed. After all, I had written an article for Georgetown’s “Ethics and Intellectual Disability Newsletter” commenting on the original report that was published, in which I indicated that side effect of the massive doses of given this child would result in “breast enlargement.” Had I simply missed the part of the where the authors described the mastectomy? After all, it would make no sense to publish a debate on the merits of set of interventions and leave out a major part what was done.

After the mastectomy component of the operation was revealed both the original authors acknowledged that the child’s “breast buds” had been removed but suggested that this was an entirely different procedure than a mastectomy. Time interviewed Gunther (the surgeon and one of the original authors), “Removing breast buds, Gunther says, is a much less invasive procedure than a mastectomy” Diekema, the other author of the original article told National Public Radio, “So it’s sort of very different procedure than an adult mastectomy would be” and suggested that it was more like removing a birth mark. They seemed to make it clear that such a procedure could never be considered an actual mastectomy. Still, since the the authors took the trouble to describe some other very minor aspects of the intervention (e.g., that they had removed her appendix while her abdomen had been surgically opened for her hysterectomy), it seemed strange that they left out this anything-but-a-mastectomy procedure.

After the dust cleared… after it had been determined that there was probably cause for a child abuse and neglect investigation… after the investigation found that the hospital had acted illegally… after the hospital acknowledged that it had broken the law and agreed to put a number of reforms in place, two questions remain: (1) Did the authors actually believe that the surgery performed was so different that it could not be considered to be a mastectomy? (2) Why was the breast surgery that was performed left out of the original account of the surgery?

The first question is relatively straight forward. The May 2007 Washington Protection & Advocacy System report of their investigation is publicly available and it includes some interesting appendices (These are available for download but be warned that it is a large 4.4 MB file). A redacted version of the ethics consultation for the interventions is included. While it does suggest that a mastectomy would be a less invasive procedure because the girls breasts were not fully developed (part of reason for the initial referral is that the child was showing early signs of sexual maturity, including breast development), the procedure discussed is clearly identified as “mastectomy”, and it is identified as a major part of the ethical discussion. However, the published version of the “ethical debate” simply leaves this out. Exhibit R consists of health insurer billing information. It indicates billing for a “BILAT SIMPLE MASTECTOMY” or radical mastectomy of both breasts. So apparently, when it was time to get paid, no one felt it necessary to explain that the procedure performed was much too minor to be called a mastectomy.

The second question about why this part of the intervention went first unmentioned and later euphemized is harder to answer. I think it has something to do with with our general level of consciousness about the physical, psychological, and social impact of mastectomy. …But really I don’t know the answer and would love to know what other people think about this…

for a deeper discussion of the Ashley X case see Mysteries and Questions Surrounding the Ashley X Case

7 thoughts on “Mastectomy, not mastectomy

  1. After reading the CNN article, it seems to me that they were trying to make it look as though this surgery was not about infantalization. While they seemed to have some ready-made answers to why the other aspects of the intervention were worthwhile, I can’t imagine how they’d justify the mastectomy except as an attempt to keep her child-like. So, perhaps the omission in the first case was a matter of maintaining consistency, and the aversion to refering to it as a mastectomy later might well be due to the same concern. It seems to me that given the leading questions in the CNN article, if the author knew of the breat surgery they would be sure to ask about it. But I’m just speculating there 🙂

  2. Your view makes sense to me, Virtualjess. I think infantilization was a part of the plan. The mastectomy was the “smoking-gun” evidence that this was essentially a cosmetic procedure, intended to make or keep the Ashley X in the childlike state that her parents liked, and it was difficult to defend these procedures unless they could be transformed from cosmetic to therapeutic procedures for two reasons. (1) The risks, costs, and pain involved in these interventions would be hard to defend as strictly cosmetic. (2) The patient had not expressed a preference, rather the parents chose what they wanted the child to look like.

  3. Thank you for calling our attention to this issue, Dr. Sobsey. I have been doing some research on this too and have also pointed out in my blog below that it was understood as mastectomy in the hospital special ethics committee in 2004 as we can see in the Exhibit L of the WPAS investigative report and that Dr. Diekema might have tried to hide the fact in a CNN interview.

    As for the lack of effort to find out the patient preference pointed out in your comment, I think the recent Illinois court opinion on the K. E. J case might be a good reference. I’d appreciate it if you would visit my post about it.

  4. Thanks Huahima,
    Your blog includes a wealth of info on this case, and is a good resource for anyone trying to wade through all of the discussion.

  5. Pingback: Ethics of Pediatric Prophylactic Mastectomy « What Sorts of People

  6. Pingback: Ashley X: 10 unanswered questions « icad

  7. Pingback: Peter Singer on Parental Choice, Disability, and Ashley X « What Sorts of People

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