Well, since I am going to Seattle this weekend to see my buddies missdevylish and crankmama, I was googling Seattle, and naturally enough came across the incredibly interesting Pillow Angel story.
This Seattle based case involves a severely disabled nine-year-old girl called Ashley X (who her parents call Pillow Angel), who has, under their requst, undergone a hysterectomy, had her breast buds removed, and is having daily oestrogen treatments to ensure she will never grow taller than her current 4ft 5ins or weigh more than her present 75lbs.
Despite the fact that Pillow Angel has static encephalopathy and will never develop beyond the level of a three month old, I don't think anyone can help feeling horrified that parents would sanctify the mutilation of their child with unnecessary surgery.
But obviously there are two sides to this. Pillow Angel's parents want to care for her at home rather than putting her in a home, so it seems understandable that they want the child to stay small so that she is easier to carry about. They also say that they are protecting her from a hypothetical unwanted pregnancy as a result of hypothetical child abuse. This fear of abuse is also behind the removal of her breast buds, since apparently “large breasts run in the family”. They also say, "Ashley has no need for developed breasts since she will not breast feed," her parents argue, "and their presence would only be a source of discomfort to her."
The ethics committee of the Seattle Children's Hospital who allowed the treatment to go ahead essentially did a cost-benefit analysis and concluded that the rewards outweighed the risks. Keeping Ashley smaller and more portable, the doctors argued, has medical as well as emotional benefits: more movement means better circulation, digestion and muscle condition, and fewer sores and infections.
Ashley’s parents, responding to accusations that what they’d done was “grotesque”, wrote: “The oestrogen treatment is not what is grotesque here. Rather it is the prospect of having a full-grown fertile woman endowed with the mind of a baby.”
There is undoubtedly something incredibly creepy about parents who do not wish their daughter to become sexually mature. On the other hand, why should she be allowed to sexually develop, since she will never have sex (unless coerced)?
So mingled in with all the feelings of horror, I can understand why they did it. And if you want to attempt to understand their motivation, go to her parents' blog.
Okay, I don't know exactly where I stand on this issue. But one thing occured to me that maybe no one else has thought about. What if, in the future, when the girl has grown up, maybe even after her parents have died, what if there are new developments in medicine, whereby Pillow Angel is able to think in a more mature, maybe even in an adult fashion, maybe even be able to walk and funtion normally? How would she feel knowing her parents had done this to her? How would she feel, knowing they had stopped her from ever having a normal life? That's what really freaks me out about all this, that no one's given any thought to what could happen in the future.
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15 comments:
No matter how you slice it, that's sick. That girl already has problems, and they are just sick for doing that to her. That kind of surgery shouldn't even exist for children.
Honestly, I just think it is wrong......I can't even form any intelligent arguement as to why I feel it is wrong, I just have a gut wrenching feeling that it is wrong.
we've been discussing this on other blogs and it's something that's been spinning in my mind for a while now. i have to say i agree with you: while it does sound "logical" on one level, it freaks me out on another, but my most valid argument would be that the child's parents have thought myopically. Advances in medical technology may have let the child lead an age-appropriate life in the future...but now all chances of that have been erased.
What bothers me is that they're preventing a normal, natural function of their daugther's body. It's like pulling out all her teeth, just in case she might get a cavity. I can't agree with it. There are other alternatives available to deal with their concerns. Something that wasn't addressed by the parents is the lack of adequate funding to help parents care for severely disabled children.
I agree... taking extraordinary measures like this for the sake of convenience is just going too far, whatever the intentions are. If she were to become a grown woman with the mind of a baby... that's who she would be, inconvenient or not.
I also agree that it's hard to really judge without being in their position... but my instincts say No!
Okay, I'm going to break down the issue and give my 2 cents:
-hysterectomy: yes, I can see once she has started to menustrate this being a hygiene issue. It seems odd that the parents would focus upon the threat of abuse and pregnancy, especially when the child is only 9.
-removal of breast buds: creepy.
-oestrogen treatments to stunt growth: even more creepy than the breast bud removal.
-nickname of Pillow Angel: really really creepy. Wow. Way to objectify your child.
Carefully avoiding the specific case, I was having a drink with a friend of mine recently. He heads up a team at a London University that creates pseudo-hybrids made from adult stem cells implanted into rabbit cells and then encouraged to develop. The Government is moving to ban it. As I sat sympathising with him it occurred to me that despite having studied ethics at post-graduate level the modern world is throwing up dilemmas I simply no longer have any reliable ethical instinct for.
I did the only thing I could in the circumstances ... drank heavily and was sick on my shoes.
Of course, Ashley's parents tooke these steps to help their child and ensure that they could share their family life with her and continue to give her the care she needs at home. I think that the medical procedures that Ashley underwent were performed to enhance her life, and isn't that what medical skill is supposed to do?
It was a decision born of love and compassion and with Ashley's well-being as the main priority. But still, such a very hard decision for those parents to make.
Further, I think that the parents were thinking of the future, emma. They had taken the advice of those with the very best medical knowledge and been able to establish a realistic picture of what their daughter's future involved. A Disneyland pipedream of cures and miracles does not mean compassion in my book.
It has been widely reported in Australia. I agree with Iris. I don't really know why it is wrong, it just feels wrong. It reminds me of a cute little puppy at christmas that becomes a problem when it grows and is no longer wanted. Not that I am saying she is not wanted of course. Nature made us all less than perfect to a greater or lesser degree and most accept that. It is a hard one, but it just feels wrong to me.
I.. I.. uh.. wow. I see the logic.. sort of.. but wow.
WOW that is creepy. I'm with Alpha - even the name "Pillow Angel" is creepy.
And deb has a great point - like pulling teeth to prevent cavities. Is there a history of heart disease in the family? Better yank that thing out, then, too, because you don't want to deal with THAT later. Yeesh.
Convenience was taken too far - even the argument about bathing her was shallow. They couldn't adapt a system to bathe her later in a mature adult form? I'm pretty sure there are other people who have had to adapt to this sort of thing. Maybe ask around a little.
Or, you know, rip anything out of your daughter that might be a problem later.
I can't speak for her parents, as my two children are healthy. I can't imagine making their decision, but I also can't imagine having a child who won't grow up. I'm wondering about the hospital's ethics committee and the "first do no harm" part of the Hyppocratic Oath. Surgery is painful, with side effects. Scar tissue. Part of the human condition is to grow up. But I'm not her or her parents. Ugh. This just makes me squeamish and grateful that I worry about actual developmental milestones.
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I blogged about this as well, and came up with the same "I dunno" answer you did.
Because of the type of disease, I can't help but think of the movie Awakenings with Robin Williams (based on a True Story), and can't help but wonder if despite her outward appearance of being an infant that there is a functioning mind inside just waiting to be freed.
But since I am not Bill Frist, I wouldn't dare try and "decide" this to be true since there is obviously not enough information.
I wish there was an easy answer to this, but I just don't know.
My neighbour has a 45/50 year old son who is about like the girl in this article. He is only capable of making a bit of a moan (although loudly) and spends most of his time in their yard with his hand occupied in his pants.
He also likes to be patted on the head and will pull his hand from his pants to take the hand of any passer-by to get them to pat him on the head. It would be sweet and a bit silly in a 3 year old, in a 45/50 year old it's grotesque.
Having seen this and seen the challenge for the family (and the lack of support from the community, as someone already mentioned) I think one does have to consider the realities of life for someone who is severely disabled and the people who care for them. But there are ways to manage that without such permanent damage.
I also think the name Pillow Angel is creepy.
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