Full Version: Keeping Ashley a Child
BBC News Story
A severely disabled Seattle nine year old girl, whose name has so far only been given as Ashley, who has static encephalopathy, (meaning she will never progress mentally beyond the age of three months) has, at her parents' request, had surgery to remove her womb, ovaries, breast tissue, and been given radical hormone treatment.
The net result is that her body will not now undergo puberty or adolescence, and so will remain 'child-sized'. Her parents will therefore be able to lift and carry her on family outings, around the home, etc. without using artificial aids or lifting devices.
The rationale being given by her parents is that, without her surgery, her quality of life would suffer through loss of physical contact with them (if she's always on a lifting device, rather than being lifted bodily by her father or mother). Also, as she will always mentally be a developed as a young baby, their is (it is argued) some consonance in keeping her child-sized rather than allowing her to grow into an adult body.
No court has sat on the issue, though an ethics committee at the hospital which carried out the surgery did review the case before proceeding.
The surgery has already been carried out - it is a done deal.
Disability rights groups here in the UK are, understandably perhaps, condemning this decision, saying that it is not really the welfare of the child that's being considered, but the convenience of the parents.
It is also being argued that, in a publicly-funded comprehensive healthcare system like the UK, such a decision would never be necessary, since the relevant care support would be provided automatically by the state in such a case. It is also being argued that, under the provisions of integration of the European delcaration of Human Rights into English Law - for which there is no US equivalent, such a case would automatically be referred to a British court with a court-appointed legal representative to speak for the rights of the child, independent of the parents.
Obviously (and thankfully), this is a such disabilities are rare, and (to my knowledge) such treatment is entirely without precedent; I sincerely hope that nobody here on
ever has to make such a decision. But it does raise interesting, and thorny, ethical issues:
Are the parents right to have taken this action? Do parental rights of non interference from outside agencies trump the right of children, unable to give consent legally anyway (and ever, in this case),. protection from surgery which is, at best, of questionable necessity?
Are the surgical team right to have carried it out? Is it right that they are the arbiters of their own propriety in such matters?
Is the Seattle/Washington legal system right not to require judicial review of such precedent-setting procedures, to protect the disabled or incapable (for whatever reason) from parental motivations which are open to question and surgical motivations which do not have obvious and immediate clinical need, especially in a private healthcare system where the surgical team would not have been paid had the procedure not taken place?
Is American legal system right not to formally incorporate ideas of universal human rights into federal or state law?
Are British disability rights campaigners right to take umbrage at a case which can have little or no impact on their rights and treatment in the UK
A severely disabled Seattle nine year old girl, whose name has so far only been given as Ashley, who has static encephalopathy, (meaning she will never progress mentally beyond the age of three months) has, at her parents' request, had surgery to remove her womb, ovaries, breast tissue, and been given radical hormone treatment.
The net result is that her body will not now undergo puberty or adolescence, and so will remain 'child-sized'. Her parents will therefore be able to lift and carry her on family outings, around the home, etc. without using artificial aids or lifting devices.
The rationale being given by her parents is that, without her surgery, her quality of life would suffer through loss of physical contact with them (if she's always on a lifting device, rather than being lifted bodily by her father or mother). Also, as she will always mentally be a developed as a young baby, their is (it is argued) some consonance in keeping her child-sized rather than allowing her to grow into an adult body.
No court has sat on the issue, though an ethics committee at the hospital which carried out the surgery did review the case before proceeding.
The surgery has already been carried out - it is a done deal.
Disability rights groups here in the UK are, understandably perhaps, condemning this decision, saying that it is not really the welfare of the child that's being considered, but the convenience of the parents.
It is also being argued that, in a publicly-funded comprehensive healthcare system like the UK, such a decision would never be necessary, since the relevant care support would be provided automatically by the state in such a case. It is also being argued that, under the provisions of integration of the European delcaration of Human Rights into English Law - for which there is no US equivalent, such a case would automatically be referred to a British court with a court-appointed legal representative to speak for the rights of the child, independent of the parents.
Obviously (and thankfully), this is a such disabilities are rare, and (to my knowledge) such treatment is entirely without precedent; I sincerely hope that nobody here on
ever has to make such a decision. But it does raise interesting, and thorny, ethical issues:Are the parents right to have taken this action? Do parental rights of non interference from outside agencies trump the right of children, unable to give consent legally anyway (and ever, in this case),. protection from surgery which is, at best, of questionable necessity?
Are the surgical team right to have carried it out? Is it right that they are the arbiters of their own propriety in such matters?
Is the Seattle/Washington legal system right not to require judicial review of such precedent-setting procedures, to protect the disabled or incapable (for whatever reason) from parental motivations which are open to question and surgical motivations which do not have obvious and immediate clinical need, especially in a private healthcare system where the surgical team would not have been paid had the procedure not taken place?
Is American legal system right not to formally incorporate ideas of universal human rights into federal or state law?
Are British disability rights campaigners right to take umbrage at a case which can have little or no impact on their rights and treatment in the UK
Are the parents right to have taken this action? Do parental rights of non interference from outside agencies trump the right of children, unable to give consent legally anyway (and ever, in this case),. protection from surgery which is, at best, of questionable necessity?
After some browsing (since I’m not familiar with Static Encephalopathy) I discovered that it varies in its severity. Obviously, Ashley’s case is extremely severe. Interestingly, the leading cause is drinking during pregnancy. Could this also be influenced by parental guilt?
I also got redirected several times to articles discussing cerebral palsy. I’m not sure if they are the same???
Columbia
What I find utterly grotesque is the surgery to remove her breasts and the hormone treatment to stunt her growth…all in the name of convenience. Granted, a forced hysterectomy is fairly hideous also. One could argue that parents make decisions for their children every day, and why should this be any different. But this case is so odd and extreme that one wonders what was going on in the minds of the parents and the medical community. The whole scenario smacks of the eugenics proponents of yore, and forced sterilization of mentally handicapped people. The fact that they call her their “pillow angel” and that she “stays right where we place her” is just plain creepy. Is this poor child a human being or a decorative vase?
Are the surgical team right to have carried it out? Is it right that they are the arbiters of their own propriety in such matters?
This is a difficult question, especially when considering the extremity of Ashley’s disability, but I think it sets a dangerous precedent. Doctors and parents shouldn’t be allowed to play God. I can almost understand the hysterectomy, in that it means she would never suffer through menstruation with an infant’s perception of pain, but it still doesn’t set well with me.
Is the Seattle/Washington legal system right not to require judicial review of such precedent-setting procedures, to protect the disabled or incapable (for whatever reason) from parental motivations which are open to question and surgical motivations which do not have obvious and immediate clinical need, especially in a private healthcare system where the surgical team would not have been paid had the procedure not taken place?
I’m not sure where this question is going; are you speculating that money was an incentive for the doctors to perform the procedure? Whether or not that’s the case, I think a case like this definitely needed further scrutiny by the legal system.
Is American legal system right not to formally incorporate ideas of universal human rights into federal or state law?
I don’t know enough to answer this.
Are British disability rights campaigners right to take umbrage at a case which can have little or no impact on their rights and treatment in the UK
Sure. This could potentially affect people in other countries; health is a universal issue. Goodness knows Americans stick their noses into other countries’ business with less provocation.
Edited since I answered the last question incorrectly. D'oh!
After some browsing (since I’m not familiar with Static Encephalopathy) I discovered that it varies in its severity. Obviously, Ashley’s case is extremely severe. Interestingly, the leading cause is drinking during pregnancy. Could this also be influenced by parental guilt?
QUOTE
The leading cause of developmental disabilities characterized by Static Encephalopathy is consumption of alcohol during pregnancy. Come Over
I also got redirected several times to articles discussing cerebral palsy. I’m not sure if they are the same???
Columbia
What I find utterly grotesque is the surgery to remove her breasts and the hormone treatment to stunt her growth…all in the name of convenience. Granted, a forced hysterectomy is fairly hideous also. One could argue that parents make decisions for their children every day, and why should this be any different. But this case is so odd and extreme that one wonders what was going on in the minds of the parents and the medical community. The whole scenario smacks of the eugenics proponents of yore, and forced sterilization of mentally handicapped people. The fact that they call her their “pillow angel” and that she “stays right where we place her” is just plain creepy. Is this poor child a human being or a decorative vase?
Are the surgical team right to have carried it out? Is it right that they are the arbiters of their own propriety in such matters?
This is a difficult question, especially when considering the extremity of Ashley’s disability, but I think it sets a dangerous precedent. Doctors and parents shouldn’t be allowed to play God. I can almost understand the hysterectomy, in that it means she would never suffer through menstruation with an infant’s perception of pain, but it still doesn’t set well with me.
Is the Seattle/Washington legal system right not to require judicial review of such precedent-setting procedures, to protect the disabled or incapable (for whatever reason) from parental motivations which are open to question and surgical motivations which do not have obvious and immediate clinical need, especially in a private healthcare system where the surgical team would not have been paid had the procedure not taken place?
I’m not sure where this question is going; are you speculating that money was an incentive for the doctors to perform the procedure? Whether or not that’s the case, I think a case like this definitely needed further scrutiny by the legal system.
Is American legal system right not to formally incorporate ideas of universal human rights into federal or state law?
I don’t know enough to answer this.
Are British disability rights campaigners right to take umbrage at a case which can have little or no impact on their rights and treatment in the UK
Sure. This could potentially affect people in other countries; health is a universal issue. Goodness knows Americans stick their noses into other countries’ business with less provocation.
Edited since I answered the last question incorrectly. D'oh!
QUOTE(Julian @ Jan 4 2007, 01:50 PM) 
Are the parents right to have taken this action? Do parental rights of non interference from outside agencies trump the right of children, unable to give consent legally anyway (and ever, in this case),. protection from surgery which is, at best, of questionable necessity?
Are the surgical team right to have carried it out? Is it right that they are the arbiters of their own propriety in such matters?
Is the Seattle/Washington legal system right not to require judicial review of such precedent-setting procedures, to protect the disabled or incapable (for whatever reason) from parental motivations which are open to question and surgical motivations which do not have obvious and immediate clinical need, especially in a private healthcare system where the surgical team would not have been paid had the procedure not taken place?
Is American legal system right not to formally incorporate ideas of universal human rights into federal or state law?
Are British disability rights campaigners right to take umbrage at a case which can have little or no impact on their rights and treatment in the UK
Perhaps they should have simply installed a handle and put Healy's on the kid and they could have wheeled her about like carry-on luggage!
I can't imagine the decision making process here. While the parents proclaim that this was all done to improve Ashley's life it looks like they want her small and with the fewest parts for weight and ease of use. Then again I have two healthy children so I'm not in any position make a judgement call on these people. I have exactly 0 understanding of what they are going through.
Having worked with scores of mentally retarded, Downs syndrome and autistic children and adults - all of whom appeared to have retained all their parts and growth capabilities I am stunned by the parents decision and the doctors enactment of it.
If you read the article quickly it seems like it was pulled from The Onion.
I will answer my own questions...
Are the parents right to have taken this action? Do parental rights of non interference from outside agencies trump the right of children, unable to give consent legally anyway (and ever, in this case),. protection from surgery which is, at best, of questionable necessity?
No, they aren't and no they don't. I see this whole incident as an example of gross child sexual abuse with the collusion of private medicine, the indifference of the justice system, and ongoing societal prejudice against the severely disabled.
If a set of parents had argued for such surgery on a normal nine-year old girl on the grounds that it meant daddy could still carry her around for the rest of her life, and she clearly enjoys being carried around and having so much physical contact now so it must be good for her too, they'd have been treated with suitable contempt and jailed, along with any medical accomplices, should they have made any attempt to put their ambitions into action. And rightly so.
But because their kid is mentally three month old, they get away with it.
Put it another way; if a three month old baby, with a mental age of three months and a diagnosed condition that said she'd never develop mentally beyond that, would it be okay for the parents to have her maimed in a carefully designed way so that she'd always be the size of a three month old baby and they coudl carry her with one arm?
Hell, we don't even allow people to mutilate their Great Dane puppies so that they'll always be puppy-sized. (Ok, not a perfect analogy, since there are smaller types of dog available. Imagine I said "mongrel".)
As I type, a radio phone-in show is covering this issue, and a woman calling in in support of the parents in this case has just said "she doesn't need a womb". Ok, let's cut off her arms and legs, too - she doesn't need them either, and will never use them, and they'll make her even lighter to carry around (she'd fit into a rucksack). GRRR....
Are the surgical team right to have carried it out? Is it right that they are the arbiters of their own propriety in such matters?
Absolutely not - no isolated group of professionals should have sole oversight over their own actions. Where was the AMA in this?
And even then, when the rights of parties incapable of consent come into play, as in this case, the courts should become involved, just as they did in the Terry Schiavo case. Where are the soundbites from the President in this case (he was asked about Schiavo, wasn't he?)?
Is the Seattle/Washington legal system right not to require judicial review of such precedent-setting procedures, to protect the disabled or incapable (for whatever reason) from parental motivations which are open to question and surgical motivations which do not have obvious and immediate clinical need, especially in a private healthcare system where the surgical team would not have been paid had the procedure not taken place?
No, they should have insisted on judicial review. At worst, this would have delayed the operations by a year, during which time she'd have grown perhaps six inches taller and 25 pounds heavier. Hardly disastrous for the parents.
And DaffyGrl, yes that's exactly what I am speculating. It concerns me that thee highest level of debate on this pocedure, prior to it's execution, was by the internal surgical ethics committee of the hospital in which it was carried out, upon which at least some of the surgical team who were to carry the procedure out (and get paid for it) sat. It doesn't take a genius to imagine how easily a possible conflict of interest might have arisen.
I'd be a lot more comfortable if a higher-level panel had reviewed it - say, at the Washington state branch of the AMA
Is American legal system right not to formally incorporate ideas of universal human rights into federal or state law?
It's complicated by the Constitution's insistence on its own supremacy, but I think somehow America should incorporate many such international ideas into domestic law. Not only Human Rights law, but the ICC and some other treaties - Kyoto is flawed, so you get a pass on that one
Are British disability rights campaigners right to take umbrage at a case which can have little or no impact on their rights and treatment in the UK?
They have domestic reasons for doing so - most particularly that most of the much-touted "reforms" of our "socialised" medical system are being modelled on the marketised, private-sector-led system in the USA (as opposed to any of the more successful, than the NHS at least, "socialised" systems in continental Europe), so they look on developements in the US medical system with a bit more concern than developments elsewhere.
Plus, there is some old-country arrogance and "only in America" smugness here, but even a broken clock is right twice a day, and on this issue the British (and American) disability rights campaigners are unequivocally right and the parents, doctors and legal authorities in Seattle are unequivocally wrong.
Are the parents right to have taken this action? Do parental rights of non interference from outside agencies trump the right of children, unable to give consent legally anyway (and ever, in this case),. protection from surgery which is, at best, of questionable necessity?
No, they aren't and no they don't. I see this whole incident as an example of gross child sexual abuse with the collusion of private medicine, the indifference of the justice system, and ongoing societal prejudice against the severely disabled.
If a set of parents had argued for such surgery on a normal nine-year old girl on the grounds that it meant daddy could still carry her around for the rest of her life, and she clearly enjoys being carried around and having so much physical contact now so it must be good for her too, they'd have been treated with suitable contempt and jailed, along with any medical accomplices, should they have made any attempt to put their ambitions into action. And rightly so.
But because their kid is mentally three month old, they get away with it.
Put it another way; if a three month old baby, with a mental age of three months and a diagnosed condition that said she'd never develop mentally beyond that, would it be okay for the parents to have her maimed in a carefully designed way so that she'd always be the size of a three month old baby and they coudl carry her with one arm?
Hell, we don't even allow people to mutilate their Great Dane puppies so that they'll always be puppy-sized. (Ok, not a perfect analogy, since there are smaller types of dog available. Imagine I said "mongrel".)
As I type, a radio phone-in show is covering this issue, and a woman calling in in support of the parents in this case has just said "she doesn't need a womb". Ok, let's cut off her arms and legs, too - she doesn't need them either, and will never use them, and they'll make her even lighter to carry around (she'd fit into a rucksack). GRRR....
Are the surgical team right to have carried it out? Is it right that they are the arbiters of their own propriety in such matters?
Absolutely not - no isolated group of professionals should have sole oversight over their own actions. Where was the AMA in this?
And even then, when the rights of parties incapable of consent come into play, as in this case, the courts should become involved, just as they did in the Terry Schiavo case. Where are the soundbites from the President in this case (he was asked about Schiavo, wasn't he?)?
Is the Seattle/Washington legal system right not to require judicial review of such precedent-setting procedures, to protect the disabled or incapable (for whatever reason) from parental motivations which are open to question and surgical motivations which do not have obvious and immediate clinical need, especially in a private healthcare system where the surgical team would not have been paid had the procedure not taken place?
No, they should have insisted on judicial review. At worst, this would have delayed the operations by a year, during which time she'd have grown perhaps six inches taller and 25 pounds heavier. Hardly disastrous for the parents.
And DaffyGrl, yes that's exactly what I am speculating. It concerns me that thee highest level of debate on this pocedure, prior to it's execution, was by the internal surgical ethics committee of the hospital in which it was carried out, upon which at least some of the surgical team who were to carry the procedure out (and get paid for it) sat. It doesn't take a genius to imagine how easily a possible conflict of interest might have arisen.
I'd be a lot more comfortable if a higher-level panel had reviewed it - say, at the Washington state branch of the AMA
Is American legal system right not to formally incorporate ideas of universal human rights into federal or state law?
It's complicated by the Constitution's insistence on its own supremacy, but I think somehow America should incorporate many such international ideas into domestic law. Not only Human Rights law, but the ICC and some other treaties - Kyoto is flawed, so you get a pass on that one
Are British disability rights campaigners right to take umbrage at a case which can have little or no impact on their rights and treatment in the UK?
They have domestic reasons for doing so - most particularly that most of the much-touted "reforms" of our "socialised" medical system are being modelled on the marketised, private-sector-led system in the USA (as opposed to any of the more successful, than the NHS at least, "socialised" systems in continental Europe), so they look on developements in the US medical system with a bit more concern than developments elsewhere.
Plus, there is some old-country arrogance and "only in America" smugness here, but even a broken clock is right twice a day, and on this issue the British (and American) disability rights campaigners are unequivocally right and the parents, doctors and legal authorities in Seattle are unequivocally wrong.
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