http://news.bbc.co.uk/2/hi/health/6230045.stm

US doctors are helping to keep a severely disabled girl child-sized at her parent's request.

Ashley X was born with severe and permanent brain damage, called static encephalopathy.

The nine-year-old has the mental ability of a three-month-old baby and cannot walk or talk.

Her parents argue that keeping her "frozen" as a girl rather than letting her go through puberty and growing into a woman will give her a better life.

They authorised doctors to remove her uterus to prevent menstruation, to limit her breast growth through the removal of breast buds so that she would not experience discomfort when lying down, and give her doses of hormones to stop her growing taller.

Opponents have accused Ashley's parents of "Frankenstein-esque" behaviour - of maiming the child for the sake of convenience.



what do you think?

__________________
the cave mouth shines
by pure force of will
i look down on the world
from the top of this lonesome hill
and you can run, and run some more
from here all the way to singapore
but i will carry you home in my teeth
-mountain goats

An incredibly sad case. The parents have a point. I think. However, I might need to look at the medical data of how, exactly, keeping her as a child would be an improvement in quality of life. The fact that she only has the mental capacity of a 3-month old, she basically has no conciousness or knowledge of what going thru puberty would mean. Sad, sad, sad.

This is one of those moral dilemmas in which it seems no answer is right. They were talking about this on the radio, apparently the reason the parents want her breasts/uterus removed is because she has huge chance of developing uterine cancer, and they want to prolong her life as long as they can (versus her dying of cancer young). I just feel awful for the parents, to watch a child suffer with any kind of disorder must be hideous, and it seems either way they are forced to deal with ethical dilemmas.

__________________
We're about to enter a whole other realm of music...we're talking Beethoven, Bob Marley, Men at Work territory

as a nurse, ive taken care of many many bedridden people. the smaller they are the less chance of bedsores so the smaller a chance of infection the fewer hospital stays the better quality of life. without menses there will be less moisture thus less chance of skin breakdown which is a source of infection. i think what they are doing is in her best interest, honestly. although extreme, i think its humane.

__________________
the cave mouth shines
by pure force of will
i look down on the world
from the top of this lonesome hill
and you can run, and run some more
from here all the way to singapore
but i will carry you home in my teeth
-mountain goats

My first reaction reading the headline was "that's disgusting of the parents" but then I read on and realised, actually I think its probably quite a good decision although it seems so extreme. On the one hand, it seems so unnatural to remove someone's body parts and to purposefully keep them small. But then again, periods are miserable enough when you a) know what they are and b) might at least have children to compensate- what is the point of this poor girl just suffering extra pain and risk of disease for no reason? Plus I think the point about her breasts is a valid one- the mentally disabled are very vulnerable to sexual abuse, and equally, why risk breast cancer? The small size again means her parents can care for her alone for most of her life. If she got to full size and weight, it would be impossible to care for her without constant nursing support and possibly modifications to the home or maybe even insitutional care.

There is an argument that they are modifying her for their convenience, but if their convenience is linked to her quality of life, which I'm sure will be better if she can stay with her parents in a moderately pain free existence, then it seems like the right thing to do, as long as it doesn't set a precendence so it eventually becomes standard to do this sort of thing to anyone disabled...

http://ashleytreatment.spaces.live.com/

that's the parents blog about the whole thing. it does all make a lot more sense after reading their reasons. it seems awful but so is the alternative really. there is something odd to me about one of the reasons (that it's more 'dignified') but other than that the reasons are solid and they show that the parents are acting in her interests.

i still find it pretty shocking though and i hope similar cases don't occur with less seriously disabled children.

emily- she's not at increased risk of uterine cancer, she's at the same risk as everyone else. she will be at increased risk of breast cancer with the oestrogen therapy though. i'm surprised they didn't do a masectomy because of that (i'm not sure what they did to her, but the nipple is still there... so i'm assuming she could still get breast cancer more easily?)

Yes it sucks. But I really congratluate the parents for not institutionalising their child, they're brave and dedicated in that sense. I don't think I would be able to be a lifelong caregiver to someone with such severe disabilities.

I can agree with that. I found the breast surgery questionable but they seem concerned about breast cancer due to it running in the family. I hope like Renegade says that it doesn't become the typical treatment for most disabled kids.

The fact that they are taking care of her is great but after the parents are gone, I hope someone just as good takes care of her.

where did you read that? the parents blog said large breasts run in the family. no mention of cancer was made.

it is the breast operation that troubles me most, because they haven't done a masectomy and she is on oestrogen treatment. she will have a much higher risk of breast cancer but the operation they did will not prevent it. a masectomy would have been a wiser idea, although it would leave her scarred badly.

From the article you posted or blog rather.

The breast bud removal has other benefits:

1- Avoiding the possibility of painful fibrocystic growth and future related surgeries. Women in Ashley’s lineage have a history of fibrocystic growth.

2- Avoiding the possibility of breast cancer. Ashley has breast cancer history in her family.

3- Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.



I can't agree with number 3 considering people who could abuse her will because they like children so therefore they would rather see small breasts than large ones. This is where I'm having difficulty with this procedure. However, in this case while I would question such things still, the parent's hearts are probably in the right place.

sorry, i missed that in the blog. seeing as she still has nipples, i believe the breast cancer risk is the same though. i think that is a big bogus.

the sexual issue is partly because she isn't going to be a child as such. she's going to grow old like an adult, just in very small form. people who could abuse her might be doing it for all sorts of reasons. they might not necessarily be paedophiles. people like that must be seriously twisted and possibly it might add to chances of her being abused. this girl is going to outlive her parents and in one day i think will be in care where her family don't see her. i can see that her parents are worried about that sort of thing happening, it does go on

however, i agree it's not a strong enough reason to warrant such major surgery. reading the blog i get the impression it's a bigger reason for them than the other issues like cysts, cancer and breasts making her more uncomfortable lying down though.

We actually have a friend of my family with a daughter in such a condition. (actually she passed a couple years ago) While she did have a full hysterectomy, nothing was done to her breasts.
I've actually known of a few "special needs" women that have gone through similar things.
It seemed odd to me at first, but my ex has an adopted family member with severe FAS and Down's, and they did NOT do this. We lived in the same house for a period of time. In short, she was molested by her birth father (a VERY sick man obviously but this girl didn't understand that it was even wrong). She has hormones that she does not understand, and her monthly cycle is just plain hell on everyone that lives with her. It's not her fault, but she doesn't understand why she's in pain (cramps), mood swing are awful to watch her go through, and must be explained the routine of caring for herself every month... etc. It would have been so much easier on both her and her caregiver for her to have had a hysterectomy.

__________________
getting tired of the collective orgasm at the public declaration of the word "change"

Dr. Nathanson

This is the first draft of an article I've written on the topic for a left wing newspaper.

--


Right now, a girl only known to the public as Ashley is about to be frozen in time. Not quite literally, but physically, through surgery and a gruelling daily course of hormones, she will remain nine years old, physically, for as long as she lives. Ashley herself is described as having the awareness and mental capability of a baby, a result of disabilities - both physical and mental - which she was born with.


The nature of Ashley's treatment (surgery will include removing her womb and breasts to prevent puberty from developing amongst other things), questions about consent, personal autonomy and medical interventions with profoundly disabled people, are raised not just for disabled people but for socialists, too. The issue raises a whole plethora of rather profound questions, which a single article could never do justice to cover fully. However there are some burning issues which have to be addressed.


Medical technology has, needless to say, made massive advances in the past fifty years and has improved the quality of life for, quite literally, billions of people across the globe. For disabled people, it has meant the chance to take an active part in society and the means to live an independent and fulfilling life.


Some may that the parents did not have a right to intervene. A fair enough point of view, but this ignores the fact that Ashley has the mental capabilities of a three month old baby. Whilst trying to avoid sanctimony and a ''disableder-than-thou' attitude towards the question, when I was a child, I didn't have further hearing tests performed on me, even though several doctors said that there was something wrong with my hearing. Turns out the doctors were right and I'm now undergoing the tests I should have had when I was two or three.


Am I bitter about it? I was, but I've moved on, I guess, and I've learned to live with my disability to the point where I don't know if I could cope with normal hearing. But I'm now a 21 year old, fully developed, with regular decision making capabilities and personal autonomy. In short, I am my own man, and I can make my own decisions. Ashley, however, can't.


So, in that case, is it acceptable for her parents to make her undergo a surgical intervention and hormone therapy?


There appears to be a method in what some perceive to be the "madness". The first obvious benefit, the parents have claimed, is that a smaller body and an absence of breasts means that it is less likely that Ashley will develop bed sores. Given that Ashley has been given the moniker of the "Pillow Angel" (albeit by her parents) and is chronically bedridden, unable to move without assistance, bed sores are naturally a real risk.


Ashley's parents also claim that, by removing her uterus and womb, the massive risk of cancer in her reproductive system - especially cervical cancer - is reduced. While there is no obvious or assumed risk of cervical cancer, other than the claims of the parents, they seem to be taking no chances. It's interesting that the parents, whilst releasing no information about themselves apart from the fact that they are both, in their own words, "college-educated professionals" living in Washington state (how they define themselves is telling by itself), say that they have received medical advice from the team of physicians who looking after Ashley.


Both, along with other surgical procedures as well as an intensive course of oestrogen therapy, are intended to lengthen the life expectancy of Ashley. No doubt they will do. However, it needs to be pointed out that some aspects of the treatment is less than altruistic. Ashley's father was interviewed in the Guardian ("Frozen in time: the disabled nine-year-old girl who will remain a child all her life", Thursday 4th January 2007). His aims were quite clear then; "But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old." He is, quite clearly, imposing his values on his daughter.


But just because his reasoning has left a lot to be desired, it doesn't mean that the actual effects of his reasoning - i.e. the surgery performed on Ashley, won't have positive side effects. It will increase her life span. It will make her life more dignified because it will be easier to care for her. She will live to a natural age in relative comfort.


Radical? Sure. But, as the saying goes, desperate people take desperate measures. No doubt that Ashley's parents will have to have undertaken a serious amount of soul-searching and will continue to do so, despite the father's protestations when interviewed originally by the Guardian. It's not an easy undertaking.


Socialists fight for the right to life in cases such as these. We assume that people born with disabilities, even profound disabilities, have a right to a fulfilling, dignified life, where society will provide them with the tools in order for them to take their place in society. Of course, the real levels of provision for disabled people are still woefully low. Modern Britain, for all the claims of the likes of Blair and his cronies, is still chronically gripped by disability discrimination. I'm only hard of hearing, and trying to interact with a society for which good hearing is a prerequisite for participation is a frustrating and depressing experience. And I think I'm lucky. What must it be like for someone who has celerabal palsy? I can't imagine.


But I can take the choice to seek treatment (or refuse it, if I were to so choose). For Ashley, she cannot. I also have my personal autonomy. I'm not dependent upon someone to perform basic functions (the operative word being "basic"). No person is an island; we are all connected, like threads, to other people around us and we are dependent on others for our survival as a collective. In Ashley's case, this is even more true. She is utterly dependent on others in order to survive, to live. She feeds through a tube. She will spend the rest of her life in nappies. She even requires assistance to turn over in bed. She is, quite literally, a baby, dependent upon it's mother for the essentials; warmth, food, shelter.


Socialists abide by the principle of informed consent. What is informed consent? It means that a person of sound judgement, armed with the facts, should be able to make their own choices. Solidarity has featured fairly extensive articles on the subject of sexual freedom and in opposition to the state's attempts to regulate adult sexuality. Of course, the question of how you deem someone to be informed and capable is a tricky one, and it may happen on a case-by-case basis. In terms of sexual autonomy, many who subscribe to 'informed consent' would believe that it has to be on a case by case basis. I believe that many 14 year olds are more than capable to decide to have sex (questions of peer pressure aside) on their own. I also believe that most people know what they are doing when they decide to mutilate themselves, whether it be by piercing, tattooing or by branding themselves - which does happen. That is their choice, and I don't just respect their choice, I fight for it too, even if I do not choose to do it myself. Socialists are consistent democrats, and this must extend to our own bodies, no matter how extreme or abnormal it may appear to mainstream society.

Con't...

Con't...

But what if a person cannot consent? Again, it may depend upon the circumstances. Having sexual intercourse with a person who is incapable of giving their consent is rape. Mutilating someone's body when they are incapable of giving their consent is assault. However, life is not a series of binary choices; not everything is black and white, it is grey scale. Say, for example, a person was run over by a bus and they were critically ill in hospital, hooked up to a life support machine. Could you say that they are capable of giving their consent to either switch off the life support machine or keep it going? The Hippocratic oath has, as one of it's most fundamental pledges, "do no harm". The assumption is that people don't want to die, so doctors, naturally, do everything to treat the sick.


This is the logic, I presume, of the physicians who are treating Ashley. They are doing everything they can to ensure she can live a relatively healthy and long life. On balance, I personally am in favour for the surgery because I believe it will help Ashley in the long term. Technological advance might mean that the surgery Ashley is undertaking might be totally unnecessary at some point in the future, but to believe that and withhold treatment now would be like taking an armful of chips and placing them all on lucky red seven at the roulette table. You can't second guess progress and you can't predict it.


Rather, you should put those chips into funding treatment and care for Ashley. The bottom line is that, in this able-bodied biased, profit driven society, treatment is still dependent upon financing. In the United States, it's all dependent upon what kind of health insurance you have. It's quite apparent that Ashley's "college-educated professional" parents have good insurance and can afford (or rather, their insurers can afford) to have the best care possible for Ashley. However, for working class parents with disabled children, the story is quite often different. Ashley's surgery will, of course, cost thousands of dollars, but ever-pressed social security and public health schemes, both in the United States and Britain, just won't be able to afford such treatment and are dependent upon government funded schemes which provide just enough support, in terms of equipment, medicine and nursing care, with some respite care if the parents are lucky. It seems that, if you're going to be born disabled, then at least be born disabled into a rich family.


I don't know what I'd do if I were in the position of Ashley's parents, and I don't think I ever will. But I think that's OK. Ultimately, I don't think there is such a thing as the "right" answer in cases like this, and there can be no one true 'socialist' position on it, either. However, there are issues which need to be discussed.

Heard about this. I don't really know how to feel about it. It seems wrong for all kinds of reasons, but I can understand their point. If she's absolutely not going to age or get better in any way, I guess it's fine, but doctors have been wrong about such things in the past. Stephen Hawking wasn't supposed to live much beyond 20, but he'd at least twice that now. It would be a bit sucky to be stuck in a child's body. But it sounds like they're pretty sure she won't improve.

I guess it's okay. I wouldn't feel great about it, but like the doctors, I can't really think of a reason why it's particularly "wrong".

When I first heard about this on the Dutch news, I was kind of appalled that parents would do this to their kid, but that was just my first initial reaction.
I later started thinking about one of my moms' cousins, who was born blind, deaf, spastic etc. basically all he could do was drool and scream.
My moms niece fell down an escalator while 5 months pregnant and was rushed to hospital, bleeding.
The doctors told her it was best to abort, the baby wouldn't live long, and wouldn't realize he was alive.
She's Catholic, and decided against it.
She had the baby, a boy, and the doctors claimed each year he would die soon.
He lived for 18,5 years.
In that time, but my moms niece and her husband underwent several hernia surgeries, they had little or no time for their daughter who was born healthy after Richard.
Their whole house and car were adjusted to suit his needs, because they felt they brought him into this world, so they should care for him.
If they had done what these parents did, keep him small, they wouldn't have had all the heartache they did.
No surgeries, no need for construction done on the house and remodel the car, because they could have still carried him.
So now I see a lot of the pro's of this story, and I think the parents are brave for doing so, I'm sure they've gotten and still will get a lot of crap over this.
I do have a slight issue with the partial breast removal if it's done to de-sexualize her, since I think most if not all people who abuse disabled children don't care if they have boobs or not.

I think the problem people have with it is that, for example, in the case you've described, what we're skirting around is: the kid was totally dependent, barely able to experience his own existence, and a fucking pain in the arse to his entire family, so the sensible thing really would have been to have had an abortion.

That's why it's ultimately a case of personal morality. Logically, there's no reason not to correct/eradicate any deficiency you can, but we'd be lying if we couldn't admit how wrong that feels.