Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

"I'm sure Ashley is fine now, but lets review the situation in 20yrs time, I and most of my colleagues believe you will not see the cute 9yr old that her parents hope to keep, more likely you will witness the sad fact of an almost 30yr old woman in an artificially small body and in incredible discomfort that she can't explain to others. Where will her parents be then ?

I too hate the notion of the procedure being carried out for 'convenience'. What's is even more disturbing is the parents admit to that, to deny it's a conveniece descision is hypocritical after her parents have said precisely that IS the reason."

I don't think the parents have said they want her to remain cute. They have said they want to remain small so they are able to continue to care for her. I presume they'll still be with her.

They have not said its for their convenience. They have said it so they can continue to care for her. Can you not see there is nothing convenient about that? Disagree with their decision by alll means, the area is very grey, but don't make them out to be some lardy arsed couch potatoes who can't be bothered to get up out of their chair to care for her.

I don't really understand the cute bit- where does that come into it? I'm well aware that my son gets people on side now partly because he's good looking (the escorts were going on about how gorgeous he is on Friday). People warm to him.

I'm aware that a non-verbal 30 year old with challenging behaviours is unlikely too have people warming to him because of the way he looks (odd mannerisms etc are going to be far odder in an adult). I know that I won't care one iota and will love him every bit as much as I do now.

Nobody is implying Ashley's parents are lardy a*d people who cant be bother to look after her.

As you rightly say they want to care for her, it just so happens that its far more 'convenient' if she's still in a childs body.

The 'convenience' debate distresses a great number of people, including both myself and my wife, it is however crucial to the case in question.

I don't like it any more than you do.

But its not covenience, convenience is frozen lasagne over fresh home made

this is POSSIBILITY

there are limits to what you can pick up / move / carry around, thsoe tend to diminsh with age also.

I'm glad Ganymede posted. The whole idea of putting someone through surgical and medical procedures to modify their body without their consent or even understanding, and without medical necessity is very disturbing.

The parents mentioned that breasts might make sitting in a wheelchair uncomfortable because of the chest restraint. That's an argument for better wheelchair design, rather than surgery.

It's horrifying that the level of support for people with profound physical and mental disabilities is so pathetic that this could even be considered. Surely what this case should lead to is a storm of protest and unstoppable demands for a revolution in care for people with such disabilities? It's tragic that it hasn't. In the most powerful country in the world.

I agree Edam, and I would probably change my balance of opinion if the USA had an infrastructure that could support the required respite / equipment / support needs of Ashley

Agree with Edam- I think that it's utterly appalling and tragic that Ashley's parents feel that they have to resort to such drastic and potentially risky surgery because the systems in place to support them and their daughter in adulthood are so very poor and inadequate. If this is genuinely the least worst option in the context of the horror that would await Ashley in a care home in the richest country in the world then Edam is absolutely right, imo- a revolution in care for people with disabilities is what is needed.

A considerable number of respondents have expressed disgust at the possibilty Ashley's parents have carried out this 'treatment'(?) for reasons of convenience, the fact remains however they have openly said that is precisely the case. In their eyes a woman with the body of a 9yr old will be easier to move etc, no-one can dispute that, but in the interests of lessening their burden Ashley will almost certainly pay in later years.

They bloody well did NOT say it was for their convenience. They have repeatedly said exactly the opposite. Holding and cuddling and carrying Ashley is vital to ASHLEY (as it is to any baby). Being able to be with her family instead of bedbound and alone is vital to ASHLEY (as it is to any baby). Being small dramatically reduces her risk of bedsores (a very serious problem for immobile people)
Osteoporosis is of course a risk for Ashley, primarily because she is completely immobile and totally tube fed. I see no evidence that her ovaries have been removed.
I am surprised a doctor is so ignorant about the oestrogen treatment to reduce Ashley's growth. Far from being some dangerous, experimental treatment, it has been around since the 1950s and medical reports say emphatically that side effects are 'mild and transient' during the treatment (which doesn't last long) and that there is no evidence at all of long-term side effectshe oestrogen treatment Other adverse effects
As for 'where will her parents be then', where do you think they will be? They will be caring for their daughter every minute of every day for the rest of their lives.

Parents quite frequently take decisions about their children's bodies. They take the decision to amputate a limb or for a child to have difficult treatment or surgery. They decide to have their child's ears pinned back under general anaesthetic to prevent them being teased in later life. They take the decision to give them potentially risky treatment so they will be taller or shorter in later life so their final stature will be more socially acceptable. These decisions are taken for far more 'trivial' reasons that the ones given for Ashley's treatment.

can I ask anyone who knows who puts "ages" on these children. I mean who decides a mental age of 2 or what ever(sorry bit off topic.)

2shoes in the unit I used to wrk in, they would come in with assessments of where they ahd reached age wise- so if all the boxes were ticked up to and including 18 months,, it would most likely say 'functioning as a two year old'

just always wondered about it. it is not something that is ever said about dd.
I assume then that once they have said it the chances of improvemant are very low.

It's not convenience, it;'s not a case of being easier or more difficult it's a case of it being possible for them to care for her or not.

Edam- yes, yes, but I'm afraid arguments for better services just have me howling on the floor with laughter. It will never happen. A woman locally has a dd very similar to Ashley (medical negligence at birth). Her dd needs a new wheelchair. She doesn't fit it now- she's too large. If her wheelchair doesn't fit she will be physically damaged by sitting in the wrong chair. Without a wheelchair she can't go out at all. She's been told she has to wait 18 months for a new one. Her doctors know that this will damage her. Don't know about the US, my experience of the UK system is that it is pretty dreadful at this sort of thing.

The thing is this girl probably won't wait 18 months for a new chair as her mother will not allow her to wait 18 months for a new chair- she's already been on the front of the local paper and she'll be busy doing everything in her power to get her dd a chair that fits (she is a very active campaigner).

No wonder parents don't want to hand their children over to the authorities.

Also locally they are closing a lot of adult day centres in favour of mainstream community care (read cheaper). So these very profoundly disabled adults are removed from the place they have always known - with their peers, and wheeled about in town by a different couple of "carers" each day. Or they would be, except the elderly parents won't allow it- so they go without respite.

A revolution in care will never happen- who is going to campaign for it? A bunch of carers exhausted and worn down from years and years of caring. How many people are going to care enough to vote on the care issue?

I find this all very disturbing. For one, the child is already doubly incontinent, a little menstrual blood isn't so hard to keep control of. Very few people truly suffer (I mean suffer, not be uncomfortable) with their monthlys. Breast pain again is minimal in the majority of women. Keeping her small is to make the parents lives easier not in Ashleys best interests.

Where do we go next.....remove her teeth as she won't eat anyway? How about remove her legs and arms.....easier to dress

And I do know severely disabled children and and young adults (I have one of my own)

Can't see any plus points personally

I think most people have no idea whatsoever how very extreme this child's disability is. She won't get better. Not even a bit. She will always be - mentally - a very small baby. She cannot possible feel indignity. Her physical size will make absolutely no difference to her, except that she will be able to continue to enjoy being cuddled and carried and go out with her family. You simply cannot ever compare her to a 'normal' person. A 'normal' adult woman would feel a lack of dignity of being in nappies, of being treated like a baby. Ashley won't.

I can remember the agonising breast pain of puberty. Not from straps, but from anything or nothing. And the breast pain of PMT, and ghastly period pains. I dread them even for my healthy intelligent dd. I know she'll understand explanations and gladly accept comfort. If I knew she'd never be able to understand (and these parents do know that) I'd consider anything to spare her pain.

I certainly would not seek medical advice from a general surgeon or from any non-specialist. A multidisciplinary approach would be essential in order to weigh all the pros and cons.

The cost Ganymede describes (long-term sequelae of surgery) would have to be balanced against benefits such as increased (passive) mobility, fewer chest infections and bed sores, reduced stress (from avoidance of recurrent pain) as well as all the emotional and social benefits Ashley's parents have described.

I don't know the right answer either but I do think consulting an ethics committee is a reasonable way to go about it and I do believe the parents have done their utmost to act in her best interests.

In this country, if such a course of action were proposed, it would have to go through the courts with the child's interests independently represented by the official solicitor. I don't know Ganymede's grounds for asserting that it would 'never be allowed'. Has there been a test case?

Bed sores have killed people. It's not trivial.

2 shoes- it's an attempt to categorise iyswim. So ds1 is always marked down as langauge development of 12-18 months as that's the boxes that can be ticked. IN reality is language development is nothing like a typically developing 12-18 month olds, it all over the place. So for example he can understand "if you wet the bed you have to have the waterproof duvet, if you keep your pyjamas on you can have a nice duvet", but I've spent a good part of this afternoon trying to teach yes/no as in

I don't want to fall out with anyone here, I'm trying to take an impartial view without emotion clouding the issue. That by it's very nature comes across as harsh and uncaring, though that isn't my intention.

Do you think the procedure would be allowed in the Uk ?

... the answer is almost certainly not.

Ok, so why wouldn't it be allowed here ?

...the answer to this one essentially hinges on the argument that the procedure will benefit the parents though there is no tangible evidence to suggest Ashley herself will benefit when viwed against the suffering she will (has) endure(d)

Thats a hard pill to swallow, it's upsetting, believe me I'm as upset as any other chatter here. It is however almost certainly the descision Uk governing bodies would decide.

Let's not kid ourselves here, the healthy sexual organs have been removed from a 9yr old child, her growth has now been stunted, the problems this will cause her in later life have yet to materialise but they are likely to be numerous. Almost certainly she will have a shorter lifespan.

The sad part of all this is Ashley has no means of stating her wish, if she did, then its problem solved and we all live happily ever after. Some would argue she would (if capable) agree with her parents descision others would argue with equal validity she may also say, stop this, I have enough problems without bodily mutilation. No-one know what she would say.

By vitue of this fact of not knowing her desires isnt it fairer and more humane to let nature take its course ? As i stated in my first posting I would not carry out this 'treatment' nor would any of my professional colleagues.

Dreadful as it sounds, despite Ashley's small stature she will indeed age in the same way we all do. Dependent on her lifespan (probably not what it would have been prior to treatment) she will develop wrinkles, grey hair etc like we all do in time. What then ? suddenly we have an elderly lady encapsulated in the body of a 9yr old, to put it bluntly she will be a freak of nature.

Another poster earlier made a remark about her 30yr old son with disabilties. Its wonderful to hear how the mum is proud of her son and loves him in the way she does, I'm also sure her son loves mum equally. What mum (sorry I can't remember your name) also said was that people liked her son, they warmed to him, I think even the word 'handsome' was mentioned. He's handsome because he's been allowed to develop at his natural bodily rate, he's a 30yr old man in a 30yr old body just a nature intended.

Ashley will never experience that, at the moment her body roughly corresponds to her chronological age, as years pass and the gap widens something just wont be quite right. No longer do we have a 9yr old in a 9yr old body we have a 30, 40, 50 year old in one. The strain that will put on her body can easily be imagined.

I intend to follow this case carefully over the ensuing years. As I've already said I'm by no means an expert on American medical ethics and even less so on their laws so it's difficult to say wether a similar procedure will be carried out again, public outrage will no doubt make it harder next time but probably wont stop it. What I will wager though is in later years when the irreversible damage becomes apparent the procedure will be outlawed.

Years ago the earth was flat, we locked people with severe disabilties into mental institutions, we hung people for crimes they didn't commit, they were all good ideas at the time. In years to come someone in a chat forum like this will be saying 'Do you remember when we used to sterilse and stunt the growth of mentally disabled children ?'

I'm sorry but I'm afraid thats the harsh reality of this whole debacle.

Aloha "she cannot possibly feel indignity".

I think that is a very dangerous idea. So those of us who do understand indignity have a right to inflict it on those who dont ?

( I think indignity is a side issue in this case btw)

And I'm not huge but I'd hate to wear a bra to lie down in all day, but without one (and maybe even with one) if she grows large breasts she could easily end up with horrible thrush infections, even open sores under her breasts.
I get so upset and angry at comments like: 'where will her parents be then?@ which imply they will be off living in up somewhere. I would bet my house that they will be with their daughter, cleaning her teeth, changing her nappies, wiping her bottom, bathing her, talking to her, cuddling her, carrying her, loving her right up - physical strength permitting - to the day they day. A day they will dread and fear, not because they don't want to die, but because they are so terrified of who will care for their child after they have gone.

You've misread my post- my son is 7 and handsome-even to people who have no reason to love him- I said that at 30 he won't be handsome to the majority (he'll be odd), but that I will still love him. As I'm sure Ashely's parents will- no matter what she looks like.

I think the parents did the right thing.

'Do you remember when we used to sterilse and stunt the growth of mentally disabled children ?'

No they won't because they don't. This is one case of a very profoundly disabled child. Not severely, but profoundly. Big difference. It's extreme. I hope that there willl never be blanket rules and regulations on anything, it's that that causes suffering.