Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

very intersting pov, thankyou ganymede.

(brain-ache now though)

The thing is we arwe talking about a child who is 3 months old mentally and will always be so. I cant agree that it is right to let her grow into an adult with everything that entails. To say she is entitled to is kind of irrelevant as she has no awareness of this. Now, in terms of improving the quality of her life I would say the benefits outweigh the risks. Surely the things a 3 month old needs more than anything is to be cuddled and held. Take that away and the opportunity for her to enjoy life is kind of zilch.

Welcome to mumsnet btw. Be warned though, tis addictive

That was a very intersting post. The issues and problems associated with this situation are huge. I cannot for one second imagine what is to be that girl's parents. I am sure that they have looked into and discussed the physical health risks to Ashley by retarding her development and i am guessing that they did not enter into this process lightly. However, this is not just about Ashley, it is about the needs of her parents too. In order to be able to continue as her primary careres they have to be able to cope and it would a lot easier to look after her as a child as an adult.

I agree northercules. Can't think of anything more hideous than a baby trapped in an adults body.

Were her ovaries removed? That would surely affect the hormonal balance. What are the risks of osteoporitis in a child who can never stand- is the potential problem from that (if she were to develop it) anywhere comparable with the problems it would cause an active typical adult. What is her life expectancy? Bldder problems- she's incontinent- what are her risks anyway. Interesting post- but reading it, to me you are talking about the risks/potential benefit if this operation were to be carried out on a typical child. She's not, and never will be. I don't see how you can come to a conclusion that its absolutely not in her intersts without seeing her particular case in full. I do think it's very extreme, but I believe her case is extreme.

I will never see being physically able to care for a profoundly disabled child as a convenience. Nor do I see being physically unable to care for a profoundly disabled child so having to find some sort of (non existent decent) care for them as a convenience. I do, and always will find that suggestion to be offensive and dismissive of the issues- whether or not you agree with the treatment, don't dismiss their actions- which they carried out so that they could continue to care for their daughter (very inconveniently if they want any sort of life)- as a convenience -like they couldn't be bothered to do it properly.

What I mean is given her starting points- very profoundly disabled- are the additional problems that she is likely to develop as detrimental (given her quality of life now) as they would be to someone who was physically active non learning disabled. You can't compare her case to the risks to a typically developing child.

Anmd what about the benefits- a typically developing child would have no benefits from receiving this treatment- Ashley does get some- being able to be cuddled and cradled is a huge benefit if that is the limit of your life experience.

What I'm trying to say is that the risk/benefit ratio is completely different from that of any tyoicallly developing child- so you have to start from Ashley, lok at her case- and really not compare with anyone else if you want to decide whether it will benefit her.

Ethics committees should be flexible enough to do thiat on a case by case basis.

Fab post ganymede. It really did make me stop in my train of thought and consider the "other side".

UNfortunatly i am still of the belief that this was still the best course of action in this particular case.

As JimJams has pointed out, many of the consequences to this "treatment" will be irrelevant to her.

For this child her only quality of life will come from the affection and pyshical contact she gets from her parents.
the most important thing in a 3 month olds life is being cuddled, to remove the ease in which that can be maintained would be devestating.

I think that you have the amazing gift of being able to look at this situation through a surgeons eyes. Many of us here have the even greater gift of being able to see it through a mother's eyes.

Yes Nothercules, you are right the site can be addictive, my intention was in creating a 'log in' to make one post giving a medical view on the issue then to delete membership, I now feel oblidged to reply to comments made.

I've been accused of comparing Ashley's case to a 'normal' 9yr old child, having read my initial post twice more I'm somewhat bewildered where that idea came from. Of course Ashley isn't a normal 9 yr old, we dont perform hysterectomies or artificially stunt the growth of 'normal' (I hate that word in this context)people.

The point I'm making is, the 'treatment Ashley has undergone (and will do for life to some extent) will place her body incredibly vulnerable to complications in later life. That's not emotion talking that's medical fact.

To say the benefits outweigh the risks is a tenuous argument at best, as I've stated earlier the procedure would almost certainly be denied in the Uk. There's a reason for that. The reason is in the Uk ethics commitees, disabled rights groups, high court judges etc would say in the long term this isn't in the patients interest. That also is fact.

What are the benefits ?.... well the parents will certainly benefit, and it could be said some of that will indeed cascade down to Ashley though its very doubtful in her current position she will ever appreciate that. In essence to say she will ever benefit is a weak argument and any benfit she may get is likely to be be minimal. That's the argument 'for'

Now let's view the situation through a more pragmatic window. What are the potential risks ? Well undergoing any surgery under general anasthesia has risks, we dont like to think about it but people do indeed die on the operating table, thankfully it's are but it does happen. Let's not run away with the idea Ashley had one operation and everythings rosy, I think you'll find its an on going process, that is putting her at risk everytime and probably unecessary distress. (if she can feel the cuddles I'm pretty certain she can sense the fear of yet another visit to the 'theatre'). Next let's look at her general health, by all accounts her body is (or was) normal for her age, the likelyhood is that will remain so for a number of years. However it's highly unlikely a child of 9 who's had her uterus and newly forming breasts removed as well as being pumped with drugs to stunt her growth will not suffer later complications, I'll repeat that.... it's highly unlikely.

Moving away from the medical facts we have a moral issue, is it actually right to perform this kind of procedure on an otherwise (physically) healthy body just because we think it's in a persons best interest and they cant answer back ? I forget the name of the lady speaking on behalf of the disabled rights commission but her words were something like 'this case has put our work back 100 years'.
Dignity often comes up in cases like this, Ashley's parents say she has no concept of dignity (thats probably true) it doesnt however mean she can be subject to an indignity.

Ganymede ~ thank you. You have brought up many valid points and I respect your opinion immensely.
Actually I have almost changed my orginal opinion on your 2 posts that you made.

Ganymede good post you have answered a lot of the things I was wondering about.

I would have thought that fear of a trip to the operating theatre is beyond what she is capable of to be honest.

My point was that you were talking about a risks vs benefits of a healthy child. How much of her current quality of life would be lost if she was unlucky enough to develop the conditions you list? If she develops the conditions and actually her quality of life barely alters as a consequence of that, then should they be considered with the same weight as you would if you were considering a typical child? That's my point about extreme situations, the starting point is so very different. I was very careful to use the word "typical" rather than normal as typical is used in the literature. I have a very abnormal child so I'm not keen on the word normal either.

She'll lose dignitiy if she has to go into a care home. That's a fact.

I do find it interesting that the people on this thread who have experience of caring for children like Ashley tend to think the decision was a difficult one but definitely not the wrong one, quite possibly the right one. I doubt a single one of them is swayed by the convenience argument (which I still find highly offensive). Without being privvy to all the circumstances of the case I couldn't say for sure whether it was in her interests of not-I don't see how anyone can.

id o wonder about one other thing. a lot has been said about the child prefering to be lifted rather than hoisted.
surely though even with this "treatment" at some stage the parents will no longer be able to lift her and will be have to use hoists. the child might stay the same but the parents will age. and lifting even a small 9yr old will take it's toll.
I have a 11 yr old dd who has cp and know from expierence that there are limits to houw much lifting you can do.

2shoes- I really think her life expectancy needed to be considered as well (I'm sure it will have been). I do know elderly parents caring for a very disabled dd (like Ashley)- they manage- just- but everyone still expects her to die before them Her life expectancy would alter the consideration on so many things.

well most children I know have been given about 35 yrs.

I agree with jimjams's point about those who have experience of severly disabled children. If you spend some time with a teenager in a wheelchair who is unable to do anything at all for themselves and communicates by blinking you might change your mind. A teenager like this may well be very large and only able to be moved in and out of the chair by a hoist - not an easy thing. Going to the toilet or having a pad changed is a performance.
This teenager is also statistically far more likely to be sexually abused. As parents grow older they will simply not be able to cope with the day to day care and the child will probably end up in a care home.

Now this teenager, if mentally a much younger age, say 3 years will probably love watching the tweenies and think the teletubbies are the beesknees. Leaving the house may also be an impossibility with the parents unless they can drive, have a suitable vehicle adn can transfer themselves.

Now if that child had the operation etc to stop growth it might well mean that they are in pain a lot. An awful lot of the kids at my school suffer from pain a lot. THey take pain killers -
it's far from perfect of course. What they love though is to be cuddled and cared for by the ones they love- their parents. THose same parents have to face the fact that one day their beloved child will have to be cared for by others who dont lvoe their child and probably wont give them cuddles.

Of course this girl is an extreme case but I thank god her parents were allowed to try to give her life a quality that my include pain but should mean she can remain surrounded by those who love her and be cuddled on a regular basis.

In answer to question would the risks (likely ones at that) have as much impact on her as a typical child (or adult) is an emphatic yes.

Arthritis, one of the complications I mentioned is, I'm sure you will agree going to be as painful in a severely disabled like Ashley as it will in a 'typical' child. Of course Ashley wont be able to convey what's wrong other than by crying but I'd argue a woman in the body of 9yr old and the mental age of a 3mth old will suffer considerable distress. Cardio vascular problems are equally as life threatening to a severely disabled child as to 'typical' child.

Like I've stated earlier, the procedure wouldn't be allowed in the Uk, the benefits are likely to be minimal (if any) but the risks are considerable. Put simply it isn't in the childs best interest.

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.

But the point is she's not a 30 year old women...

The inconveinience thing is pretty irelevant to a certain extent when discussing caring for such a severely disabled child.

Gannymeded I think part of your argument (by no means all) depends on a definition of convenience. If you consider convenience as in the nature of a trip to the convenience store, then no I really do not think that applies to this. If by convenience you mean something that makes their lives easier- well yes, but that's not bad is it? A 3 month old baby does have the ability to recognise familiars (I remember having to leave my son for a week at 3 months, he definitely was confused) and if their 'convenience' means she can remain cared for in her home then that has to be a factor in consideration.

Now, I agree that American ethics are somewhat different- for example the topic of Human Rights came up earlier, somethig the USa is not a world leader on!. Equally however, we have to remember the absence of an NHS and the same sort of support system that could be accessed (although not easily) here in the UK to enable her to remain in her own home once she had grown. I do not know if Ashlety ahs medical insurance, much I have read leads me to doubt it somewhat. So as wella s the basic equipment essential Ashley would be unable to go outside (the aprents explicitly stated this if you remember), and yet wold presumably also be unable to access respite so they could go out. She would also be difficult to move, therefore making washing / turning etc more complicated, and making her more vulnerable to bedsores, for example, something that would very definitely reduce her quality of life.

Add in the rest of the family- the photographs show other children- now consider the USA education system: if these children are to study at University level, it is likely that they will be largely self funding (one would assume that at least on aprent stays at home) and very possibly move away to study, making their support unavailable to the parents. I know I am concerned about how my Son's siblings willa ccess many of the things their peers are able to (parties for example are an issue, and friends just do not come to the house) and I can only imagine that is much multiplied by the levels of care needed by Ashley, and the systems in place in the USA.

From a biological perspective, your post amkes wonderful sense from the ittle I gathered at A-Level. But as a parent, user of Disability services for my child, (and as it happens student of ethics at Uni), this does go far beyond the biological perspectives. You say about reduced life expectancy: well there are many ethicists who would be willing to debate the value of good, loving, cared for life of slightly shorter duration in contrast to life in a cre home of longer duration. I'm not sure where Is tand on that, but there are whole debates to be had.

I honestly don't believe there is aright and wronbg in this issue. But I can see that Ashley's needs are best served by keeping her in her loving family.

I'm sorry Nothercules, put the very point I'm making is in 20yrs time she WILL be a 30yr old woman.

She may indeed still have the mental age of 3 months, she may indeed have the physical stature of a 9yr old, she will however be 30 yrs old.

Does tampering with her hormones stop her aging ?

As a 30 yr old in a childs body having undergone the surgery she has (at a very young age) followed by extensive hormonal treatment to stunt her growth, will (almost certainly) cause her great suffering in later years.

It's painful to think about it, but yes she will be 30yr old one day, not the 9yr old people like to think she is.

That assumes that being separated from her family (which is the only other option afaics) wouldn't cause her great distress. or her family, whose feeling also matter very much.

I've been in and worked in enough care homes to know that whilst there are some excellent ones out there, many are far from any sue at delivering anything akin to a decent standard of care, delivering only physical maintenance (and then often poorly). In the USa, as posters have informed us, care would mean her parents handing total control to the state; I seriously doubt the care provided will be the top end of the spectrum.

I'm also intrigued that you relate treatment purely to physical health, when the definitions of Health we are all supposed to adhere to - eg the WHO definition- are so much wider.

Health: As officially defined by the World Health Organization, a state of complete physical, mental, and social well-being, not merely the absence of disease or infirmity.

I relate to her 'physical' health to distinguish it from her mental heath.

It's merely a simple way of definining terms related to the body as opposed to the mind.

How can you differentiate body and mnd when considering total welfare, especially in this case scenario?

Any treatment is considered on the best interests of the patient. Both mental and physical considerations are taken into account

I think in this instance, perhaps 'social' bears as much significance?

Agreed.