Joel
Norman Fost, 11:08 AM EST
I'd like to start with the privacy issues, since I am generally uncomfortable when ethicists or the general public criticize individuals who are experiencing a medical/ethical crisis. Part of this is simply a concern for privacy. Part of it is because the press accounts of the medical facts are often incomplete or inaccurate. And part of it is because I wouldn't want my judgments about medical care in my family subject to national or international scrutiny, privacy aside.These concerns are mitigated in this case because the father has chosen to put his family's story in the public domain, with a website and a link to a blog that includes harsh criticism as well as support. He has been careful to not reveal his name. He does include a family photo with the faces partially blocked, leaving them identifiable at least in their local community. He says the reason for creating the website was to "share our thoughts and experience for two purposes: first, to help families who might bring similar benefits to their bedridden "Pillow Angels"; second, to address some misconceptions about the treatment and our motives for undertaking it." He has been spectacularly successful, as the website has received over one million hits in 3 days, and thousands of messages have been sent by email or to the blog site.
I find his reasons, and those of Gunther and Diekema, for pursuing the treatment plan they did very persuasive. There are compelling arguments that limiting Ashley's growth is likely to be in her interests, as well as the parents' interests, with low risks.
Joel Frader, agreeing with Brosco and Feudtner, says that the measures used to limit her growth "miss the point," which is the lack of social support which might allow the family to care for her at home even if she grew to normal adult size; e.g., by providing mechanical devices to assist in lifting her. I must day I think this misses the point, which is to try to maximize Ashley's interests, or more precisely, to maximize the ratio of benefit to burden.
I think the father makes a compelling argument that her interests will be better served by limiting her size, regardless of whether devices or supportive services are available. No matter how many people or machines are moved into the home, she will be easier to hold and move if she is smaller. She is more likely to be brought on trips and to have more pleasurable experiences. She is less likely to have complications, such as bedsores.
I also agree with the father's observation that having her size be more appropriate to her developmental level will make her less of a "freak" (my word, not his). I have long thought that part of the discomfort we feel in looking at profoundly retarded adults is the aesthetic disconnect between their developmental status and their bodies. There is nothing repulsive about a 2 month old infant, despite its limited cognitive, motor, and social skills. But when the 2 month baby is put into a 20 year old body, the disconnect is jarring.
It reminds of the scandal some years ago when it was discovered that some Cadillacs had Chevrolet engines. The owners hadn't noticed the problem until it was brought it to their attention. If children like Ashley could magically retain the appearance of an infant, they would not only be easier to care for in the physical sense, but the emotional reaction to them would probably be more favorable. This, of course, may be more of a problem for strangers than the parents, who seem wonderfully attached to her, with little difficulty seeing her as a beautiful, radiant, contributing member of their family.
Norm
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