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Are these parents right to keep their disabled daughter a

423 replies

TheDullWitch · 04/01/2007 11:45

Story here

OP posts:
preggerspoppet · 04/01/2007 22:50

I just wanted to thank the people on here for being so open about their experiences as parents of sn children.
I have to admit, I only heard a little snippet earlier on the radio news about this case and, with hindsight, I realise it was a sensationalist-onesided-headline grabbing report, but at the time I found myself feeling uncomfortable with the idea.

That was me being judgemental from a crappy 2 minute newsreel. I didn't give it anywhere near enough thought in order to judge how i felt on the subject. (admitedly i was quite busy a the time)

That really bothers me now, having read this thread and thought about it properly.

It bothers me because i have worked with sn kids, I am a paediatric nurse and have cared for a child in a very high profile ethical case where the media got it so so wrong, and as a result there was damage caused to real people.

The power the media has over us is terrifying.
I urge anyone who is/was feeling uncomfortable about this, or believe it to be wrong, to just think again about the real people living in this situation.

I most certainly 'get it' now.

Christie · 05/01/2007 00:04

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Edam · 05/01/2007 00:18

It's more than a crying shame that the economic structure of healthcare in the US has placed her parents in a position where they have to do this to their daughter in order to carry on caring for her. (I know social services in this country are hardly responsive, either.)

But the principle established here, that you can carry out serious, life-changing medical and surgical procedures on someone who cannot consent for any other reason than medical necessity, is very dangerous. I don't think ethics committee approval is enough of a safeguard, tbh. I don't think you can trust one ethics committee with a decision of such gravity that has implications across society.

Pixel · 05/01/2007 00:22

Christie, you have just said almost word for word what I was just going to post about imagining putting a 3 month old baby in a hoist instead of comforting it in your arms.

All Ashley needs is proper cuddles from a family that so obviously adores her. She doesn't care about anything else and never will. I think they made the right decision.

MamazonAKAfatty · 05/01/2007 00:47

I haven't read the whoel thread as i wanted to give my opinion without getting angry about any possible arguments there may have been already.

the way i see it is this, there is a 3 month old baby here not a 15/25/35 year old woman.
her arents are going to be changing her nappies and feeding her and having to cuddle her at night. that would be almost impossible if she were able to grow to full adult size.

would you put a 3 month old baby in a wheelchair the whole time?
would you put a 3 month old baby to bed useing a hoist?

I absolutly thin the family are doing what is best for their daughter. it may not be the choice of some of their counterparts but i think that they haved acted with their daughters best interests.

As for the removal of sexual organs. I would imagine that the father will be having to play a rather big part of his daughters daily care routine and it would have been difficult or uncomfortable to do things like dress or change her once she began to develop, she may not have been aware of it but he would.

Sometimes it is whats best for the parents as well as the child.

FioFio · 05/01/2007 07:38

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FioFio · 05/01/2007 07:42

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giddy1 · 05/01/2007 08:17

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sexkittyinwaiting · 05/01/2007 08:29

I think it's amazing that they have had the emotional strength to look after her in the way they have, hats off to them. If they decide anything that helps makes their lives easier what's the problem?

Blandmum · 05/01/2007 08:30

I have a cousin who suffered profound brain damage as a baby. He can walk (at the ability level of a child of around 1), cannot feed or cloth himself, has no language at all, is doubly incontinent. Funtions at around the 9-12 month mark. He is now 48. His mother was in her 80's trying to care for her son. How could she do that? He towered over her, could sometimes lash out etc etc. Her (and his) situation became intolerable.

The only way he could communicate with her was by crying. As Christie eloquently said, he was simply too large for his mother of cuddle and comfort.

There but for the grace of god. Poor family.

SaggarClaus · 05/01/2007 08:31

Fantastic post giddy1.

FioFio · 05/01/2007 08:33

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Jimjams2 · 05/01/2007 08:34

fantastic posts giddy and christie.

giddy1 · 05/01/2007 08:43

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Jimjams2 · 05/01/2007 08:45

They're shutting the only bloody respite care home for children in the city soon. Services? My arse.

giddy1 · 05/01/2007 12:15

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Jimjams2 · 05/01/2007 12:17

oh its a joke. I also know of a single mum with a 24 year old severely autistic son with challenging behaviours. She can't handle him, she gets beaten black and blue by him, she is desperate for residential round the clock care for him- which he needs. And nope they won't fund it because she can "manage" at home.

Services? Ha ha ha.

Dinosaur · 05/01/2007 12:21

Thanks giddy and christie - very moving.

2shoes · 05/01/2007 12:54

thanks for looking that up peachy. wasn't really to do with this family.
Just get concerned about things like this.

stleger · 05/01/2007 14:20

Giddy, Christie - you are so right. My 35 year old sil is about 9 months in ability. She can chew slightly lumpy food and spit out what she doesn't like, she can sit up if supported. She has lost the ability to crawl. Thankfully, she has stayed quite small in stature. And her parents refuse most assistance offered in the form of equipment, or keep it in the spare room. They treat her 'like a baby'. Life is hard for a lot of people, isn't it.

blueshoes · 05/01/2007 15:08

giddy1, your post about convenience made me cry. I understand now.

PeachyClair · 05/01/2007 18:16

If anyone has doubts about whether life with a disabled child is ahrd, look at my thread in SN last night- that's reality and Sam isn't even severely disabled!!!! he's pretty mild really, certainly not bad enough for us to have any intervention. Then multiply that stress by 1000, and add fear for non survival on top. Convenience? My arse!

2shoes- if you want further info I ahve loads as am doing ethics on my cousre

giddy fab post, love to you XXX

2shoes · 05/01/2007 19:08

thanks peachy but i am over it now.
I just worry about things like this setting a precedent.

Aloha · 05/01/2007 19:13

Giddy - brilliant, brilliant, powerful posts.
Do people really have such limited imaginations?

Ganymede · 06/01/2007 09:25

My wife is a regular reader of the topics within this forum and, I do from time to time view them myself, respecting her wish to remain anonymous I have created a 'log in' of my own in order that I may comment on the subject matter. As surgeon (who has performed hysterectomies) in the Uk and a parent of 3, I'd like to feel my opinion is as valid as any other member of this site wether they be male or female.

As regards 'the Ashley treatment' I would not not under any circumstances carry out the same procedures on any of my children nor would I be prepared to do so to any other child, 90% of medical professionals I have spoken to echo my sentiments. The very word 'treatment' on the parents website (which I have read in detail) is misleading for although Ashley suffers extensive mental disabiltity her physical health appears good and is no need of 'treatment'. Almost certainly the procedures involved would not be allowed within the Uk.

The uterus is often mistakenly assumed by some to be purely a reproductive organ, it is however a major component of female anatomy, the primary function being to pass hormones in to the blood stream. Whilst it isn't unknown to perform hysterectomies on otherwise healthy individuals the procedure isn't undertaken lightly, put simply the operation can be complex and indeed presents significant risks. Once removed the body then has lost a vital organ controlling the hormonal balance, hence the need for HRT. The removal of a heathly uterus from an otherwise healthy body will increase the likelyhood of strokes, osteoporitis, cardiovascular problems and bladder problems significantly. Whilst it cannot be said for certain wether Ashley will suffer similar problems in later life statistics suggest its far more likely (in the case of cardiovascular problems the probability is around 7 times as great).

Stunting a persons growth by hormonal intervention likewise poses risks and in young maturing body without a uterus regulating things these risks are considerable. It doesn't take a lot of imagination to realise artificially stunting growth in an otherwise healthy body will indeed present problems in later years. Its been stated in Ashley's case her skeletal development resembles that of a 15yr old rather than a 9yr old. Though not life threatening, the risks of arthritic problems and possible deformity are again increased significantly.

As I understand the case Ashley having had surgical carried out still undergoes regular procedures involving the use of general anasthesia in order that experts can monitor what is happening. An earlier poster to this thread posed the question 'what would happen if she died during surgery?' it's a question that upset many, it is however a valid comment.

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.

Of course her situation was considered in great depth by the Ethics commitee, that however doesn't mean they are correct. American ethics differ greatly from those of the Uk, they have the death penalty where as we don't. They allow 'treatment' like this on an otherwise healthy 9yr old where as we wouldn't. I'm by no means an expert in the field of American ethics in relation to medicine but I can assure people that in the Uk any sensitive issues like that of Ashley are viewed from the point of 'will it benefit the patient ?'. It would appear to a great many that in Ashley's case the benefit of her treatment will largely satisfy the needs of her parents which will hopefully cascade to down to Ashley herself, It does seem very much as if her needs are placed secondary.

I can appreciate the comments made by others that her dignity will be better served in the body of a 9yr old who isn't suffering the trauma of adult menstrual cycles etc whilst having the mind of a baby, it could however be argued her dignity (certainly her physical health) would be better realised in the body of an adult without the continual ordeal of treatments and surgery preventing her from maturing naturally.

Harsh at it is I'm afraid Ashley isnt a little 'bonsai baby' who can be kept artificially small, she's growing to be an adult and for her own dignity and health she should have been given that fundamental right.