Ashley X - Cruelty or Humanity?

[billythefish]

The parents of a nine-year-old girl who cannot walk or talk because of a rare brain condition have revealed how they are deliberately keeping her child-sized to give her a better life, in what they believe is a world first.

The youngster, named only as Ashley, suffers from static encephalopathy and is called "Pillow Angel" by her mother and father because she stays wherever they place her, usually on a pillow.

But three years ago, fearing that she would one day become too big to lift or move easily, they took the highly unusual decision to keep her small with a treatment known as growth attenuation.

Ashley, who doctors expect to have a normal lifespan, has had a hysterectomy, surgery to prevent breast growth and high doses of oestrogen that will keep her about 4 foot 5 tall forever.

Her weight will remain at around five and a half stone.

Last year the process was described in a medical journal, provoking outrage from some medical professionals.

http://www.timesonline.co.uk/article/0,,3-2530561,00.html?CMP=KNC-LBN&HBX_PK=ashley+x&HBX_OU=50

I just can't decide whether I agree with this or not. I think on balance, I slightly see the parent's point of view. Very difficult.

 

[barkley]

nancy grace did a segment on this last night-and i have mixed feelings about it (some things they've chosen to do seem to me extreeme such as elective appendix removal with no indication of any problem/just preventative so she'll never have appendix problems). but i can sympathize with the parent's regarding the hystorectomy-had a co-worker whose sister was in her late 30's and due to a brain issue/multiple handicaps had (like this little girl) the mental/physical abilities of a young infant-totaly disabled. the family kept her in the home and provided excellent care-but each month during the sister's period was an absolute nightmare. terrible cramping on the sister's part and obvious distress. they also lived with the fear that god forbid if she was ever sexualy assaulted it was a death sentance for her and an unborn (her body was structured such that pregnancy would have been deadly-and no pregnancy would have resulted in a live birth). they went through anguish trying to get court permission to do surgery-but the advocacy groups (at least in the area they lived in) made it next to impossible to get this type of thing approved (apparantly even severe pain was'nt a medical reason to order it-if the pain could be 'managed' with iv drugs unless there was a medical necessity which was endangering her present health).

 

[Lisa loves Pooh]

I can sympathize but can't side one way or the other.

I am thankful I do not have to be in the position to make that decision.

 

[DawnCt1]

Her awareness is very limited. With her diminuative size, she is able to held, carried, loved, cared for, have limited risk of bed sores, issues of puberty, menses. As a non communicative child, she would be unable to describe symptoms of appendicitis and they were in "there" already so there was no additional risk. I think its a very good idea and will enable her parents to care for her for a much longer period of time as they age and she would have grown considerably bigger.

 

[hentob]

Humanity.

 

[JunieJay]

Humanity.

 

[WonderfulDreamer2]

Her awareness is very limited. With her diminuative size, she is able to held, carried, loved, cared for, have limited risk of bed sores, issues of puberty, menses. As a non communicative child, she would be unable to describe symptoms of appendicitis and they were in "there" already so there was no additional risk. I think its a very good idea and will enable her parents to care for her for a much longer period of time as they age and she would have grown considerably bigger.

I totally agree. I think is was the hardest, but most loving thing they could have done for her.

 

[DVCLiz]

As weird as this all is, I have to side with humanity, too.

 

[Hedy]

Horrible, horrible cruelty. I have no doubt that in 25 years this case will be seen as an example of how backward the people of 2007 were and the doctors who did the procedure will be professional pariahs.

 

[MaryAnnDVC]

Humanity.

And Nancy Grace, who I usually find rather amusing, was extremely obnoxious last night about this topic.

There's a VERY long thread about this from about a month ago, altho it probably can't be found with "search".

 

[Aidensmom]

Her awareness is very limited. With her diminuative size, she is able to held, carried, loved, cared for, have limited risk of bed sores, issues of puberty, menses. As a non communicative child, she would be unable to describe symptoms of appendicitis and they were in "there" already so there was no additional risk. I think its a very good idea and will enable her parents to care for her for a much longer period of time as they age and she would have grown considerably bigger.

I agree. I don't see how NOT having the procedures done would have increased the quality of her life in any way.

 

[va32h]

I can certainly understand the philosophical and ethical objections. I am someone who has said on similar issues "if we allow this, then what will come next?"

But based on what I have read about this case, the parents are acting out of a desire to give their child as comfortable and happy a life as she can possibly be expected to have. I can't really fault them for that.

 

[1of6]

Humanity.

I agree.

 

[wide awake]

ITA w/ Dawn Ct. Not that I, or anyone else has any business making judgements unless we've been in the EXACT position the parents are in. I have an autistic child, luckily w/ nowhere near the issues Ashley has...and I've had to do, say, lots of things I'd never have imagined 20 years ago.

 

[ohiominnie]

some things they've chosen to do seem to me extreeme such as elective appendix removal with no indication of any problem/just preventative so she'll never have appendix problems).

Removing the appendix is standard procedure in any abdominal surgery for any person. There is no point in leaving it in there and having it become a problem in the future. Anesthesia and surgery carry risks, so why risk that twice.

As for the actual Ashley treatment procedures, at first glance I thought they were horrible, but after reading the parent's official website they obviously put a lot of thought into it and it really does make a lot of sense. Praise God I do not have to deal with what these parents do, but they make very valid points about why they chose these surgeries.

I don't think this is a good idea for a mildly disabled person, but on a case by case basis, I think we'll see more of this now.

 

[ohiominnie]

but after reading the parent's official website t

Didn't see it posted yet. If you're interested, here's the parents website:


http://ashleytreatment.spaces.live.com/Blog/cns!E25811FD0AF7C45C!149.entry

 

[inaminute]

Humanity.

IMHO, the parents have looked far into the future and decided to take the necessary steps to insure they are able to care for their daughter. I firmly believe they made their choices out of love for Ashley.

 

[Va-bear]

I can certainly understand the philosophical and ethical objections. I am someone who has said on similar issues "if we allow this, then what will come next?"

But based on what I have read about this case, the parents are acting out of a desire to give their child as comfortable and happy a life as she can possibly be expected to have. I can't really fault them for that.

This sums up how I feel too. My first thought was "no, that's wrong" but as I learned more I had to cave. It's not as if she's going to "grow-up" and decide she wants children, or wish she had breast. She doenst know what breasts are to miss them (and appearently breast cancer runs in her family - many "normal" people who carry the breast cancer gene do this also...) All she'll know is that her parents will continue her care for her in the manner she is used to ....if she got too large to hold on their lap she would probably miss that comfort. If a child only has one of two comforts in this crazy world and will not have the joys most of us get to experience, why shouldnt we allow that to continue if technology will allow it?

 

[Beth76]

Horrible, horrible cruelty.

Not trying to argue with you, but why exactly do you think it's cruel? Not just cruel, horribly cruel?

 

[debster812]

Not trying to argue with you, but why exactly do you think it's cruel? Not just cruel, horribly cruel?

Beth beat me to it.

As you are, so far, the only one viewing this in complete black or white terms, what might some alternatives have been?

I consider myself extremely lucky that this is a decision that my DH and I don't have to make. When I first heard it, I was originally taken aback, but after reading and seeing some interviews, it makes a certain amount of sense. She can continue to be comforted in the manner she is used to which is great, because I don't think she'd understand why things were changing.