[orthodoc]

This case is interesting, and disturbing ... I can see the rationale for keeping a permanently bedridden patient as small as possible. However, the other aspects of the surgery and treatment are disturbing primarily because the parents, on their web site, describe the need in terms of avoiding potential problems and then we read that virtually all the anticipated problems are either questionable, treatable, or won't come up.

For example, the fact that large breasts run in the family doesn't mean it's a slam-dunk that this child will have them; ditto for fibrocystic disease and breast cancer. If a real problem developed, it could be remedied with surgery no more extensive than what they've subjected her to already. If she gets painful menses (not something that happens with all women), pain meds are available, just as they are for all women. All babies get teething pain, and most get an ear infection or several, but we don't yank their teeth or tube their ears automatically to avoid it; we treat the pain. Potential future sexual abuse seems a reasonable concern until we read that she has never been cared for and will never be cared for by anyone but her family. And even her potential adult size, the most compelling consideration, wouldn't make her parents institutionalize her - they say that even if she weighed 300 lb they would still care for her at home.

I guess the disturbing aspects of their web site, for me, are: one, that her parents seem quite focused on promoting this 'treatment' and making other parents of disabled children aware of it; they don't present this as one isolated case with an individual solution. Two, she's a cute kid and there's a creepy tone to her parents' writing in their references to her 'pure, angelic spirit', wanting her in the same room to be near her 'positive energy', and to seeing her as their 'pillow angel' - they seem to be getting secondary benefit from her current appearance that they likely wouldn't get were she to continue growing into adulthood. If that's the chief reason for the surgery/treatment, then it wasn't about her health or safety, nor her future care. They seem to project certain attributes and qualities on to their 'pillow angel' that make them feel warm and fuzzy, but which realistically are their feelings, not hers. Not that that's a problem of itself, but wanting to keep her appearance in line with the 'pillow angel' concept is ... creepy. Somewhere in there, she has a soul and she is an individual, even if she can't communicate or learn.