I read the full text of the growth-attenuation paper written by Dr. Diekema and Dr. Fost with others in the June issue of the Pediatrics. So many questions and mysteries again. I will point out some of them here for now. Some of the questions and mysteries will be reviewed more closely in my future posts.
1. The authors’ definition of profound cognitive disability “for purpose of growth-attenuation therapy” is not totally about cognitive disabilities but mostly about physical disabilities. It disguises the fact that growth attenuation is in fact a therapy that addresses problems caused by severe physical disabilities, not by cognitive disabilities, which they have been using as a convenient excuse for justification. But maybe we should also note that the authors didn’t forget to add “for present time” when they wrote that it should be limited to children with profound cognitive disability.
2. Their justification for excluding hysterectomy and breast bud removal from discussion is something like this: Criticism was mostly targeted at hysterectomy and breast bud removal in the Ashley case controversy in 2007 (implying maybe that growth attenuation was not all that criticized and pretty much approved?), and in addition, growth attenuation does not necessarily accompany the other two interventions. But these are lame excuses. Continue reading →
A few days ago, I posted an item about the mastectomy of Ashley X, pointing out that her father,doctors and ethicists involved in the case, and some of the media reporting on the case had gone out of their way to inform the public that this was not really a mastectomy. Nevertheless, a bilateral simple (or radical) mastectomy was exactly what was discussed by the ethics committee and what the hospital billed for.
The logic behind the procedure was that Ashley might develop large breasts which could be uncomfortable for her and that removing her breasts at age six would also eliminated the risk of breast cancer later on. Continue reading →
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. Continue reading →