Child abuse or caring parents?

[rynnor]

You don't know what kind of quality of life this little one has. If she is in as loving and caring family as they say, then she may well have a fairly decent quality of life, in so far as she may well respond to people she knows, be able to emote and to show love and affection.

I read up at their site - she cannot:

- Eat - she gets it pumped into her.
- Move voluntarily - she cannot even roll into a different position.
- Recognise her parents.

The 3 month old baby thing is a gross generalisation - she cant do things a 3 month old can do - at 3 months babies are moving their limbs and some are able to turn over - she has no voluntary muscle control - this puts her more like a 1 month old baby.

She can smile but with so much brain damage it probably means very little - a normal baby at 3 months may smile but its often wind.

Its not a life anyone would recognise - in these circumstances talking about quality of life is pretty sick.

 

[old.Tohtori]

I'm just gonna bring the good old "definition of sentient being" into this even if some might find it "Non relevant":

A sentient being is one that can regognise(sp?) it's existance.

Is this the case? If not, it's nothing more then a...well...rock?

 

[rynnor]

I think I've made my position pretty clear on that one. Life is about living, not being a breathing paperweight. I wouldn't want that for any kid of mine. So maybe you think that makes me a callous bastard, but I don't think it does.

I agree with you that life does not consist of just sucking in air and crapping - theres really 2 logical schools of thought on this child.

1. That shes a human being and should be accorded all the rights and protections therein - in which case what her parents have done is an abuse of her basic human rights - no-one seems to mention that her life has been risked having her put under a general anaesthetic and undergoing major surgery (a hystarectomy alone is pretty major let alone the rest) and that she would have been in a great deal of pain following this un-neccesary surgery - all of which is a terrible thing to do to someone without consent.

Consider what she would think if she somehow got better to find her body had been mutilated by her parents? If you think that because she is so severely disabled that she doesnt have these rights then you fall into category 2.

2. That her disabilities are so severe that she no longer counts as a human being - in this case her parents can do what they like as if she was a housepet - theres no moral gulf between this and euthanasia since you have already robbed her of her human rights.

I favour category 1 - the 'what would she think?' test is pretty clear to me and with medical advances who knows what may be achieved in the future?

There really is no middle ground - unwittingly her parents have chosen the second option - probably without even realising

 

[inactionman]

Some of you may think I'm callous for saying what I said, and I would not normally do so but as I said this is a special case! Before I made the comment I did a bit of reading and found out exactly the things rynnor pointed out above.

I agree with category 2, this child is unfortunately cannot experience anything remotely resembling a normal quality of life. So the most humane thing to do is to euthanize her.

As to the who know's what medical advances may do in the future, it's an extreme longshot, and would probably require major advances in stem cell research, which the US is strongly against. It's also bit late for that, they've done a number of things to her body via surgery and hormones that would be extremely difficult to reverse, and even if she could be restored to something remotely resembling normal mental functioning, do you really think she'd thank her parents for what has been done to her?

 

[Damini]

Wow, intriguing that those that view it as cruel are also mostly the ones advocating that she be euthanised.

AFAIK, she wasn't ill at birth. She was born, developed, and then simply stopped progressing. It took a very long time for her to be diagnosed. In that time, her parents would have bonded with her, and since she was never on the brink of death (unlike that tragic Charlotte case) I don't think you can really advocate leaving your baby out on the mountainside for the elements to do it's work, or whatever your euthanasia of choice would be.

If she developed to full body weight, then the bed sores she inevitably gets would become much worse. The whole process of coping with periods would be a monthly intrusion upon her body, rather than a one off event, not to mention the pain, cramps and discomfort that would associate with it. Large breasts would weigh down on her chest, and if you can't move, they could impede breathing, add to her weight, and affect the positions she could lie in. Her appendix was removed because she can't vocalise her pain, so were it ever to burst the parents would have no idea, and she could risk blood poisoning and death. My mother was a carer, and I have seen first hand the upset that can occur when family members no longer have the strength to carry and move their child/loved one. Surely, in this circumstance, it is more humane to allow full interaction, for her to be manouverable in the home without the aid of a winch, for her to have that close physical contact with her family, than for her to grow to full size, have the added concern of bed sores (which can infections as well as considerable pain) in a body that she will never have the mental ability to control, or understand.

 

[old.Tohtori]

Wow, intriguing that those that view it as cruel are also mostly the ones advocating that she be euthanised.

Well i don't actually find it cruel, i find keeping her alive selfish by the parents.

 

[rynnor]

If she developed to full body weight, then the bed sores she inevitably gets would become much worse.

Normal people get bed sores because they spend their lives upright and then get bed-ridden - she has spent her entire life in bed so she's probably adapted as she grew - even if she hadnt there are special beds available now that counter bed sores.

The whole process of coping with periods would be a monthly intrusion upon her body, rather than a one off event, not to mention the pain, cramps and discomfort that would associate with it.

Why dont all women have a hystarectomy then if they dont want kids

Its major surgery - I bet it hurts a damn sight more than a period also so you are trading one pain v another - this overlooks the fact that you can use hormone regimes to prevent periods without potentially life threatening intrusive surgery.

Personally, I think they probably didnt fancy changing sanitary towels in addition to her nappy.

Large breasts would weigh down on her chest, and if you can't move, they could impede breathing, add to her weight, and affect the positions she could lie in.

If they manage her weight she wont get huge breasts - there is a genetic component but breast size is a lot more to do with storing fat - thats why human males look for a woman with large breasts as it shows she's a healthy partner with sufficient reserves to produce a healthy baby.

I dont see doctors slicing breasts off of other women who are paralyzed from the neck down etc. dont you think this is odd?

Her appendix was removed because she can't vocalise her pain, so were it ever to burst the parents would have no idea, and she could risk blood poisoning and death.

This is the only reasonable bit imo.

My mother was a carer, and I have seen first hand the upset that can occur when family members no longer have the strength to carry and move their child/loved one. Surely, in this circumstance, it is more humane to allow full interaction, for her to be manouverable in the home without the aid of a winch, for her to have that close physical contact with her family, than for her to grow to full size, have the added concern of bed sores (which can infections as well as considerable pain) in a body that she will never have the mental ability to control, or understand.

So you think radical surgery to make her lighter is better than adapting their home and employing a nurse? You'd support them if they wanted to have her arms and legs off then I take it since this would make her lighter and easier to move around?

 

[Damini]

Normal people get bed sores because they spend their lives upright and then get bed-ridden - she has spent her entire life in bed so she's probably adapted as she grew - even if she hadnt there are special beds available now that counter bed sores.

That's not true. My mum worked with people who have been bed ridden for years, and they still got bed sores. It's to do with blood being cut off, rather than the strength of the skin, and someone with low mobility and limited awareness cannot change position, or recognise the sensation that warns that a pressure sore is building. If they go deep, they can sometimes require skin transplants to heal, and some take over a year to heal.

Why dont all women have a hystarectomy then if they dont want kids

Because normal women who don't want kids don't have other people inserting tampons for them, or changing their sanitary towels - if you are looking at the notion of dignity, then to me that is a hell of a lot less dignified than anything else that could possibly occur. Too true they didn't want to be doing that to their child - what a demeaning process to add to everything else. Besides, quite a few women who don't want kids do get hysterectomys. Also, if you've never had period pains, then I don't think you can really comment. There have been times when I have been doubled over, crying, and if you think of that pain once a month for every year up until the age of fifty, in someone that can't understand why, who has no desire to become a parent, no sexual urges, then a one off surgery is a more suitable solution that constant injections or medication to remove the periods.

Managing weight in someone who is bed bound is hardly the easiest thing, and genetics play quite a large part in the size of the breasts. Women who are paralised yet cognitively aware would not want to lose their breasts because they are a fundamental aspect of femininity - this is a different scenario. Besides, they are not removing what is already there, but preventing the development.

Of course, I think it would be AWESOME if they removed her arms and legs, and perhaps fitted her with wheels, and a toaster. That way she could be mobile, and also make breakfast for people. It's hardly the same argument - they are keeping her body the way it is, avoiding puberty, not turning her into a disabled version of a Transformer.

 

[Louster]

When I grow up, I want to be a Transformer.

 

[rynnor]

That's not true. My mum worked with people who have been bed ridden for years, and they still got bed sores. It's to do with blood being cut off, rather than the strength of the skin, and someone with low mobility and limited awareness cannot change position, or recognise the sensation that warns that a pressure sore is building. If they go deep, they can sometimes require skin transplants to heal, and some take over a year to heal.

You missed my point - she isnt a formerly active person whos suddenly bedbound even if its for years - shes been bedbound from birth - her body will have adapted to that the same way that the skin on your feet toughens over the years due to walking. You also ignored the point about the new beds that lower the chances of bed sores plus if you are properly cared for your carer will change your position so you dont get them - bad bed sores are more a symptom of neglect by the carer.

 

[rynnor]

Of course, I think it would be AWESOME if they removed her arms and legs, and perhaps fitted her with wheels, and a toaster. That way she could be mobile, and also make breakfast for people. It's hardly the same argument - they are keeping her body the way it is, avoiding puberty, not turning her into a disabled version of a Transformer.

Theres no moral difference between chopping her breasts off than chopping her arms and legs off - I'm surprised others cant see this - thats why its such a dangerous precedent notwithstanding it sets the rights of disabled people back about 30 years!

 

[JBP|]

Am i the only one wondering why the "parents" havn't installed a decent set of wheels on the child yet?*


(Clearly this would best way to move the child around*.)

*apparently i need to add because some people might not get it otherwise.



EDIT: It seems not then

 

[Damini]

Theres no moral difference between chopping her breasts off than chopping her arms and legs off - I'm surprised others cant see this - thats why its such a dangerous precedent notwithstanding it sets the rights of disabled people back about 30 years!

There is a moral difference. She wasn't born with breasts. She currently doesn't have breasts. They are preventing the growth of breasts. They are not affecting the current shape of her body, they are not chopping her away like a bonsai tree, they are acting in advance of events to make a better life style for her.

Let's face it Rynnor, we're not going to agree on this

 

[rynnor]

Let's face it Rynnor, we're not going to agree on this

Agreed - no ones answer can be 100% right - I think its a healthy sign for western civilization that this case has provoked so much debate as it shows we care about the weakest members of our society.

 

[mycenae]

I feel a need to post some truths that I know are 100% true as I do what these parents do for a living.
Bed sores (or pressure sores) are COMPLETELY avoidable. Patients should be turned every 4 hours at least (and this doesn't have to be a big movement, tilting them 20 degreees with a pillow or elevating legs is considered enough.) and rynnor is right, there are beds that can be purchased that releive pressure areas, but nothing is as good as someone moving themselves. HOWEVER, if the patient sweats excessivly, is left in wet nappies/pads, is too hot, is not dried after a wash properly, or if they are waterlogged in their own bodies, malnourished or have fragile skin, all of these things can predispose to pressure sores....skin does NOT get used to it, if anything, it gets worse over time.
I think its harsh to judge these people without knowing more about them and their story. I look after children in this condition all the time, and have never known them to be anything other than 'vegetative' but even i can see some response in them, even if its something as small as following a toy with their eyes, or turning their head to a parents voice. When children are as 'abnormal' as this little girl, very small, almost insignificant things, suddenly become much bigger and more significant.
Personally, as I said before, i find some of their choices a little extreme, but would never go so far as to make a comment such as 'binbag, skip.' I'm sure most of us have done things in our lives others would see as wrong....all I'm saying, is don't judge a person till you've walked a while in their shoes. You try having your own child in this condition and see if your opinion changes.

 

[mycenae]

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

Lookat the pictures in that and then tell me she has no emotions. She clearly exhibits smiling and displeasure.....

 

[Mey]

The smiling is just imitation of adults around her, shes trying to develop the muscles in the face and mouth region its a natural reflex of babies. And part of normal cognitive development.

 

[Oldstude]

Jesus I pity the parents

 

[Sharma]

The smiling is just imitation of adults around her, shes trying to develop the muscles in the face and mouth region its a natural reflex of babies. And part of normal cognitive development.

Look at the photos.

That is NOT imitation.

 

[mycenae]

you're right Sharma, but like was said earlier, i thnk we're just going to have to agree to disagree here...
some think its ok, some don't, others have mixed opinions....