Her mom and dad call her their "pillow angel." You can read about 9 year old Ashley on the
blog her parents made to describe their situation.
Basically, she has had surgery and hormone treatments to keep her forever small.
In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.
The uterus and breast tissue of the bedridden 9-year-old girl were removed at a Seattle hospital, and she received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6. Read more. . .
This seems a confusing issue to me. Something feels not quite right about the whole thing, but when you read the
blog her parents made, describing the whole situation, somehow it sounds so loving.
Read more about it
here or
here. Then tell me what you think.
Her mom and dad call her their "pillow angel." You can read about 9 year old Ashley on the
blog her parents made to describe their situation.
Basically, she has had surgery and hormone treatments to keep her forever small.
5 comments:
i read what the parents have written on the blog... and i do think it's an interesting question. what exactly is appropriate in a situation like that? at first thought, it seems unethical to intervene like that in the life of a person who has no capacity to consent. but at the same time, it seems that the choice was made with love in mind. the very best quality of life ashley can have is in the close involvement of her family in her day-to-day life- and the physical involvement associated with caring for essentially an infant in an adult's body would really have limited the ability of ashley's family to provide the kind of loving, caring environment they wanted to give her.
really, how different in a long-term sense is it to have this type of surgery than it is to do essentially the same thing with drugs. yes, there is a potentially risky procedure- but not really that risky- and then end result is basically the same. but it "feels" different- more permanent maybe- to keep ashley forever a child with the surgical procedures she had. however, the overriding condition she has is permanent- and there is no hope of recovery- and it seems that the loving, caring actions of her parents were directed really at her best interests.
after reading their blog and some of the chatter about it- i think it makes sense- in their situation- perhaps not in many others- but in theirs, it seems to have been maybe the most loving thing they could have done- though still, on the edge... and something about it just seems wrong. yet, doesn't something "feel" wrong about God creating a child like that who can never know a normal life? And somehow we know that He has a purpose and a plan, though we cannot see it.
What do you think?
The consent issue didn't bother me at all, since parents always consent to procedures for their children. It is always the parents judgment that decides whether or not something is appropriate. Although, occasionally courts will step in when parents will decide to forego lifesaving treatment, and those situations are difficult. (Parents say no to chemo or blood transfusion or something.)
But generally, I think, a hysterectomy is done to treat disease, either a diseased uterus, nearby cancer, post partum hemorrhage, stuff like that. So what's different seems to be a surgical procedure not for disease but for causing someone to remain a child.
I guess that's the part that feels a little funny. Making someone remain a child is maybe a different use of medicine. Is it the same as stunting growth pharmacologically, or is it different. I don't know. Does it cause me to pause because it is not commonly done, or because it is wrong? I'm not sure.
I understand and believe that the parents have the very best interests of the child at heart. But this alone does not make their action right or wrong.
Sure wish there was more feedback here, because I really do wonder about these things.
Well, in a way, how different is a hysterectomy for these purposes than, say a cosmetic breast enhancement or a sex change operation for that matter. Society doesn't say that those types of elective procedures are unethical provided the person doing it understands the risks. If Ashley were able to make decisions for herself and decided that she wanted her uterus out because she thought she was a man or something, people might think she was weird, but there really wouldn't be much argument about it. Procedures for anyone's convenience or for cosmetic reasons seem to me to require a different kind of consent than a procedure done for medical reasons- maybe that's why I thought that part of the ethical issue at hand here involved consent. Ashely cannot say what she would like her body to look or behave like.
Maybe you're right. Maybe part of what feels uncomfortable is that it is being done to someone else.
I guess I wonder if it is akin to the "what kind of child would I like" syndrome. I'll order blue eyes girl, very intelligent, and petite size." Even if you don't kill embryos that don't measure up, this still seems wrong to me.
I know this is not the same exactly, because the underlying motive appears to be genuine love and a desire to care for the child better. But I wonder if this is part of what feels funny here?
I think it's funny that you describe my child as your example of an "ideal" child. :) he he he... I could certainly never have planned one as wonderful as she. God has better ideas than I do.
I think you are right about the sort of messing with God's work idea being part of why this feels wrong. Kind of like I'd agree with in vitro fertilization for couples who couldn't get pregnant without it (provided that the extra embryos are not "disposed of" in an unethical way)- but I wouldn't agree with it if you were doing it just to be sure you get a girl or a boy or whatever else.
Would you agree with the hysterectomy if Ashley was having painful bleeding or fibroids or something that a hysterectomy could fix? I think I would in the case of a clear medical problem. And I think Ashely's parents would say that they used the procedure to prevent such problems which for me or you might not really be such a big deal (periods, cramps, etc) but for Ashley could be very uncomfortable given her inability to understand or communicate discomfort, etc. I think that her parents' thought was that they'd just treat those problems before they came up.
Anyway, just musing now. Time for a nap. I emailed your site to Dr. Hoogerwerf (who is very interested in medical ethics and cases like this) and he emailed back and said he wanted to think about it for awhile, but he will get back to us with his comments. So stay tuned. It's an interesting discussion.
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