Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

aloha, I know her condition is very severe and what the drastic treatment including surgery will do to help ease her/her family's life, but I still feel very uneasy about it

giddy- I think of you a lot, because I know when we get to your position I'll feel the same. The thought of handing my baby over to people who don't love him Although I know we'll have to.

The father posted a statement on his website after "Ashley?s doctors, Daniel Gunther and Douglas Diekema, wrote in their paper for the October issue of the Archives of Pediatrics and Adolescent Medicine that the treatment would ?remove one of the major obstacles to family care and might extend the time that parents with the ability, resources and inclination to care for their child at home might be able to do so?.

The paper inspired hundreds of postings on the internet: many supportive, others furious. ?I find this offensive if not perverse,? read one. ?Truly a milestone in our convenience-minded society.?

It was the critical comments that finally provoked Ashley?s father to respond. "

No idea if the doctors had the parents' permission to go public with the case. And the media are completely sensationalising it with misleading headlines.

Quote from: The Times

Giddy - were you able to do anything to prepare your dd for periods? My friend's dd will be 10 soon, and is obviously heading towards puberty, but she doesn't know how/if to try and prepare her. She gets conflicting advice from the pros.

I find this comment "Truly a milestone in our convenience-minded society" the most offensive I have ever read, and have to assume it has been made by someone who doesn't begin to understand the issues, or have the faintest idea about caring for profoundly disabled children.

I just laughed at the "more services" argument. Had Social Services around today to see if they can help us make the house safe for ds1 (so he won't kill himself in it, and also so we can get some sleep when he wakes at 1am- we can't afford to do the work that needs to be done). Asked about how long it will take (its taken 6 weeks for the referral) was told at least 6 months plus before any assessment is even started.

I just looked at the photographs and explanation on the parents' website . It is really moving, and wonderful to see that Ashley brings her family so much happiness

Thanks for the link upwind. I think sometimes people don't realise that a profoundly/severely disabled child can bring as much joy (despite the exhaustion!) as a non-disabled child. That's why it can be devastating and so difficult to stop being the carer. Once ds1 goes into care I won't even be able to decide what clothes he is bought, let alone make any other decisions about him. I don't want someone to be buying him 100% bloody nylon.

Silly little things, but the contribute to why people want to keep those they love with them for as long as possible.

Personally I think It's a disgrace !

I can appreciate the fact the poor girl will never possess an adult mind but for the parents to put her through invasive surgery to deny her an adult body and add to her indignity is quite frankly barbaric !

The arguments they make about practical issues concerning moving her etc clearly demonstrate how they have put their selfish convenience before her dignity.

Giving her a hysterectomy is a bad enough invasion (though I can see the reason behind it) but to then remove her breasts and stunt her growth takes it too far.

Didn't Hitler advocate similar things to disabled people some years ago ?

Sounds like the parents and medical staff are doing this with the best of intentions, to enable this little girl to be looked after in her home as long as possible. A very sad and difficult situation to be in.

Toastee - I think it's disgraceful to compare this case to the actions of Hitler and the Nazis, which as well as compulsory sterilisation of all sorts of people deemed "undesirable' by the Nazis, also involved the murder of disabled adults and children.

a bit of sensitivity wouldn't go a-miss toastie, have an opinion, by all means, but I have to say that was offensive to me even and I am on the fence...

at least I was until hearing from giddy.

Agreed preggerspoppet, just so judgemental. To disagree is one thing, to be so dismissive of another's motives not fair really.

And Hitler did murder people with sn (including depression and quite mild syndromes) so really no comparisons please. Murdering someone because of their differences and operating in order to be able to cared for your loved one- rather different.

Yes, her parents are clearly selfish monsters. They want to personally, and without respite, care for their utterly helpless daughter every minute of every day for the whole of the rest of their lives. Good job we aren't all that 'selfish', eh?

I don't see what is so selfish to want to be able to keep caring for your own child as long as possible. Whether we agree with the intervention or not, I don't think it is selfish of them to want to be in aposition to be capable of caring for their daughter.

I wouldn't dare to comment on this family's decision.

An oft quoted saying on mn is to 'walk a mile in their shoes'. I really wouldn't want to go 100 yards.

I just wanted to say I think it is wrong to say the family have been hounded out by the press. Her doctors wrote about her treatment, anonymously, in a respected medical journal, which is good practise IMO. But the family were upset about some of the criticism the treatment received (despite their never being named) so they went semi-public with a blog explaining their motives. I agree some of the reporting has been inaccurate (I pointed out one inaccuracy on this thread) and no doubt there will be horrible insensitive stuff (like the comments on this thread from whoever it was) but the family made the decision to issue the pictures etc.

Of couse it isnt selfish to want to care for a loved one a long as possible but there is a finely drawn line on what you can do to an individual in order to facilitate that.

Performing invasive treatments to stunt a person growth amongst other things is in itself degrading.

What happened to the Hippocratic oath ?

Aloha - it was me that wondered about the publicity and you are quite right - the parents have chosen to go semi public their daughter's case.

I first came across the story on the times website which had what was to me a misleading heading and caption. I suspect a lot of outraged people did not bother reading more than the begining of the story.

'Performing invasive treatments to stunt a person growth amongst other things is in itself degrading.'

And having to give her up completely to total strangers who may or may not give a toss about her and use her for their own perverse satisfication b/c she's grown so much you, her aging parents, are no longer able to care for her or afford to care for her, isn't?

Do you love her more than her Mum and Dad?

Do strangers love your child more than you?

Until that's the case, I think it's unfair to judge this family.

hear hear expat, Toastee I don't think you understand whay or why this family have done this. I don't believe you understand the issues at all.