h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Welsh-Rabbit spotted an interesting item in the news today: http://www.bbc.co.uk/dna/h2g2/brunel/F19585?thread=502685&show=20&skip=1061#pi1065 "Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life. The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk. Along with hormone doses to limit her growth, Ashley's parents also opted for surgery to block breast growth and had her uterus and appendix removed. They say the treatment will help to improve her quality of life." This obviously raises many moral and practical issues. Firstly, we should be aware that only a minimum of information is available for us to make judgements on, so we should be careful in making assumptions. Nevertheless: 1) Have the parents made the correct decision for themselves, the child or both? 2) Is this a morally correct use of medical resources?

How can we know? Without finding another child with the same condition and without this treatment, then waiting 20 years to see which has the better quality of life it is impossible to judge.

It seems a reasonable decision to me.

Think it'd be better if the link was in here for people:
http://news.bbc.co.uk/1/hi/world/americas/6229799.stm

First of all I am deliberately posting this before reading the posted links.
When I first heard this on the news they mentioned an operation and treatment to make it easier to carry the person around when earlier, I didn't catch all news item and imagined they had carried out a leg removal to make the person lighter to carry.
I am going to focus on several things here. One of the things they did was a appendics removal , now if this is done as a prevenative thing, then this is not carried out on a person who doesn't have learning disabilities so odd that this would be thought OK on someone who does, remeber I haven't read the links.
Now part of the reason that she was given hormone type things was to make it easier for parents to carry her around and look after her. Well although it is slower using even manual hoists it is possible, electic ceiling tracked hoists go from bed to bath so involve no lifting, although are more expensive of course. I personally feel somewhat uncomfortable about tampering with a body though as wouldn't think it OK on smoeone who hasn't got Learning Disabilities, as I said I have not read the links though, but these are my current opinions.

Thanks Bouncy I totally forgot

Eeek, I have now read the link and feel even more uncomforatable with what they did, so if everyone went down that road we would end up with all people with severe learning disabilities de sexed. A major operation was carried out on someone due to them having learning disabilities that would not be carried out on someone who hadn't.

I think this has clearly been done out of love. The parents have really thought this through.

How do you explain to a baby about periods?
How do you protect an infant in a woman's body from predatory men?
How will other kids react to a fully-grown woman being amongst them?

If she is to have the mind of a child all her life, let her be a child all her life. She will never know differently.

The parents have given their child a wonderful gift, in my opinion.

I am sorry but I am still not sure of the parents motives, love can blind.
Makeing someone being unable to carry a child doesn't protect someone from abuse. Without going into details that should be obvious.
Why should she be amoung children for the rest of her life?
If you can't explain periods to someone how can you explain that major surgery is about to be carried out on them?
You can never protect someone from abuse 100% however if they are keeping her at home they can limit access. Some care homes have a policy where only female staff do personal care on female residents, although there maybe abuse by female staff the majority is carried out by male staff.

I think what some people are missing here is this phrase from the article...

"Ashley has static encephalopathy, a rare brain condition which will not improve."

And she's mentally 3 months old...

So, the parents have chosen to spend the rest of their lives looking after someone who will, to all intents and purposes, remain a baby for the rest of their natural life, with only the most basic of needs and wants... Food, Drink, Caring for, and, most importantly, love and affection.

No, the parents can't explain to the child why they're imposing the treatment on the child, but the child will no nothing more - and quite frankly, I'm full of admiration for any parent capable of providing that sort of commitment.

Personally I think they're acting for the good of the child.

(Oh, and as an aside, appendixes sometimes do get removed as a preventive measure - often in adults likely to be away from possible medical treatment for extended periods) - so I've even less of a problem with that procedure - especially given the odds of someone suffering from appendicitis at sometime in their lives, the knowledge that if and when it happens to the little girl in the future, she'll be totally incapable of signalling the source of the problem to anyone and the seriousness of the consequences if it isn't diagnosed quickly enough.

It's either that or every time the child starts crying in the future and appears to have a stomach-ache, you've got to assume it might be an appendicitis.

By having the operations done, they have restricted their child's growth and reproductive facilities. Growth will give her no advantage in the years to come and she will never be able to decide about her reproduction, so it may as well be removed.

Have you ever tried to lift a grown human being who has increased spasticity and move them somewhere? The operations mean that the parents can continue to lift her in and out of the bath, bed and toilet, without recourse to expensive equipment or extra care staff. Which in America, cost a fortune. The parents can now look after her at home, by themselves, with extra time to spend talking and playing with her, which is all she will understand. At a mental age of 3 months, a period is not understandable, a cuddle is.

Ashley's condition will not restrict her life expectancy hugely and she can be expected to live for many years. If she does have to go into care if her parents can't cope in their later life, then they have no worries about any consequenses of abuse. Pregnancy, childbirth and STD's would be a difficult thing to explain to anyone vulnerable, but to someone at a mental age of 3 months......... An operation under anaesthetic seems slightly more humane.

Are they being selfish? As much as any other parent is when it comes to the health and welfare for their child.

Are the treatments moral? Depends who you listen to. The parents have lived with this child for 9 years, obviously love her and want to care for her for as long as they can, by themselves, like any parent does. All of these moral crusaders don't have the 24 hour care and worry over the future that the parents do.

Not an easy descision for anyone, but 'I' think they've done the right thing.

I too am in admiration for someone who will look after their child who has severe learning disabilities at home, as my sister does, however that does not stop me thinking that stunting soeones growth chemically is wrong, some of the quite major opearations done to stop abuse seem to not actually be able to prevent abuse anyway, stop a pregnancy yes, but then we can get into the area of forced sterilisation of people with less severe learning disabilities that went on in past, where as these days voluntary contraception and even marriage are the way that things are done more these days.
The chemically stunting of growth is as worrying as anything as clearly electric hoists, etc make things a lot easier, you can't carry a heavy child around for long and a wheel chair can go just about anywhere you can walk with a heavy child.
I am in a difficult position here about what I can say on here, but suffice to say, I have indepth knowledge of what someone who has not had the surgery and treatment this child has been given needs in the way of day to day care as an adult. I actually believe that a full size adult who is handled with the correct aids like electric hoists, slip sheets, slings, etc may actually be easier for the carer than having to physically lift and carry a large child constantly. with the constant risk of back injury, particularly when lifting and turning at same time as is inevitable.
I thankfully believe that some of what was done to this child would not be allowed in this country, thank God.

What would be the benefit to the child of *not* having the procedures?

Sorry, I should clarify that a bit! I can't see how the child would be any better off if she was left to physically mature. I agree with the moral argument that we shouldn't meddle to the detriment of the patient where it isn't necessary, and certainly not just for the convenience of the parents/carers, but I can't see how this *is* to the detriment of the patient.

I should have added, I have in depth knowledge of an adult in an identical position without surgery for around 11 years, also I suspect that if someone can pay for the surgery in America and continuing drug treatment then they are likely to have the funds to pay for equipment.

I think the reason this issue is, to me, uncomfortable is that it raises the specter of eugenics. If we dabble with disabled kids in this situation, where do we draw the line, and how early do we start dabbling, or how late do we start terminating.

It's all very thorny, emotive stuff which I reckon is painted in shades of grey.

Absolutely, but removing someones breasts seems odd to me, well intentioned but perhaps not even achieving what was intended.
The days of people with Down's Syndrome being in so called "hospitals" as if there is something wrong with them has long since started to disapear, being actors on TV programmes these days has hopefully shown the way to go....strewth I am not even one of the right on brigade but some things still get to even me!

I think what worries me is this talk of "Oh well she only has the mind of a baby so it is OK to do it", well apart from the possible danger of under estimating mental ability when she gets to 50 years old she will still be a 50 year old adult inside and deserves the respect for that. Cutting bits off someone and making them look small like a child does not stop you being a 50 year old woman inside.

Further information: http://news.bbc.co.uk/2/hi/health/6230045.stm
The blog mentioned: http://ashleytreatment.spaces.live.com/blog/
BBC News video: http://news.bbc.co.uk/nolavconsole/...ia=asx&subtitles=hide&alreadySeen=1

I really can't make my mind up about this (to the extent that I just wrote a large post and deleted it).

From what I gather she won't mature to be a 50 year old woman inside, either emotionally or intellectually. That being the case, is there anything to be gained by not carrying out the procedures? If her parents are in a better position to care for her now than they would have been without the procedures is it not a good thing that they've done it? (assuming that it won't ultimately be to the detriment of the girl).

How easy is it to sit a full-grown adult with a mental age of 3 months on your knee for a cuddle and a bounce?

If you lie on breasts wrong it is extremely painful. Menstruation can be extremely painful. And messy.

I agree something like this COULD be the start of a slippery slope so it obviously needs very careful decision-making policies in place. But I also agree with what the parents have done. I would imagine the quality of care they can give a child is going to be physically much better that what they could give an adult.

Deb