Parents go to court to battle for the life of a severely disabled baby.

[wannaBe]

except this time they are on opposite sides

God how awful.

I was talking about the one I linked to, not the one the thread was originally about, those parents have no choice as it had to go to court.

Sorry i have only read the first page of this thread but will read the rest after this post so sorry if anyone else has already made any of these points.

I find it unbelievable that any parent would not fight to the bitter end to make sure that their child stayed alive, i know i would.

This little boy is capable of living a life which perhaps to HIM is the best life there is to lead. We don't walk in his shoes and he might bloody well really enjoy his life, all this crap about quality of life well i can understand it for people who have lived a so called normal life and lose their abilility to speak/move/need help with breathing normally but for those that have never had it then surely it is nothing much to miss?

We are all given crosses to bear/encumberances which some of us deal with better than others. Who is to say that this boy does not really love his life, just because he is not capable of articulating that? I bet if you gave him a choice he would choose not to exit this world because he was too expensive to keep around/not much life expectancy/didn't fit societal norm?

I understand that some people will say that unless he has a great deal of medical intervention he would not live anyway but isn't that why science and medicine has advanced to this degree? To keep human beings like him alive? Not to make our tits bigger, grow ears on mice and generally fuck about with black holes in Switzerland.

Huge furore last week about Downs Syndrome babies basically being eliminated from society because of medical advances (different subject altogether i know but it sort of ties in) This boy is here, he is totally reliant on his fellow man for his survival, there is no way whatever the cost that every effort should not be made to prolong his life.

I feel desperately sorry for the parents, it must be hard on both of them especially given their opposing views, everybody will have a different viewpoint on this but i am afraid mine is slanted from the boys, this is a beautiful life and i would want to stay in it too.

I wonder whether some parents speak out about these things because they feel that it's harsh to criticise someone wanting to make that decision for their child (because people will criticise, it's human nature to judge someone who decides to allow their own child to die), just as there are people who talk about life with a severely disabled child in order to dispell many of the misconceptions about living with disability. After all every child and every situation is different, and while for many the answer is to keep the child alive at all costs, to some the answer must surely be to allow the child to die peacefully. And that cannot always be the wrong decision surely.

Sometimes, and I cannot speak about this case as it's impossible to know, but sometimes allowing a child to die rather than forcing it to live must surely be the right thing for that child. And I am talking about allowing a child to die, not killing a child, because there is obviously a difference.

Oh, sorry 2shoes, got the wrong end of the stick.

rosie, have you ever had a child who is desperately, seriously ill or disabled with a life-threatening condition or requiring permanent ventilation just to say alive?

I think it's impossible for anyone who hasn't (like me, thank heavens) to 'know' in advance what we'd do or how we feel. But I can imagine if a child was suffering and had no prospect of that suffering being relieved, I might well feel it was better to withdraw medical treatment that was keeping them alive artificially.

Equally, I know someone whose child was profoundly disabled. They always knew he was unlikely to live long. At his funeral, his mother said "I bet lots of you are thinking it's a relief. And it isn't. I would give everything, everything, for one more second, one more day, one more hour with him'.

I honestly think the reason a lot of us judge people who are making these kind of decisions is because it is a decision none of us can really comprehend. Only being in that position could ever give us an real understanding of what leads a person to arrive at that decision.

Knowing that someone else has had to make these decisions means that maybe, just maybe, if we were in that position we would have to make a terrible decision too - and that thought, even subconciously, is too much to handle, so we judge instead. It is easier and less painful.

Even writing this post the thought coming to mind that I could, one day, have to maek that choice for a child of mine has my eyes filling and my hands shaking, often it is easier to judge the "victim" than to acknowledge that these things do happen because acknolwedging it makes it more real, real means it could happen to you.

"I think it's very unfair, even cruel, to have a go at the mother for this being in the public domain."

absolutely what Edam said.

I think each case is individual too and shouldn't be judged by anyone, not even those people who have childen living with severe disability.

Bloody witch hunts and bandwagon jumping. Really gets my goat when people try to use other people's heartbreaking situations to start some kind of campaign or bolster their own personal campaigning.

Edam no i haven't, i just know like possibly quite a lot of parents how i would feel if one of my babies were in that situation i would have done anything to keep them alive. I cannot say precisley because you are right, i have never thank god been in that position.

I promise i am only giving my point of view, i am not slating the parents and have no idea how on a day to day basis they cope However, we are not in the shoes of that child, what about what he wants? I am saying that withdrawing medical support to enable him to stay alive may well be something that if he was given a choice about would not be an option that he wanted to take thats all.

Your last paragraph rings so true with me as i too knew someone in a very similar postion to your aquaintance and she said much the same, just another week, month or year with her DD.

I have mentioned this on a thread where the Charlotte Wyatt case was being discussed a few months ago and i explained that my DD2 was run over and seriously hurt 11 years ago, when she was under the car all i could think to myself was i don't care how bad she is or how injured i just really really really don't want her to die, anything but that. The same went for my son who had a serious head injury at the beginning of this week all i could think about was how i desperately didn't want to loose him, anything in my thinking was better than that.

We can never walk in someone elses shoes and many of us wouldnt want to, i agree with you entirely about it being impossible to know in advance how we would feel, i have been given a tiny insight twice now and i am very very grateful thats all it has been but in the case of this boy i just feel that there is more to it than saying that his quality of life is so bad that even if he requires permanent ventilation he has a right to life, it is after all his.

Its terribly sad for all parties involved and i would hate to be in their situation, the rights and wrongs of this case will be different to everybody, it is an emotive subject but i do believe with all of the medical advances we are lucky enough have it is something that we will probably see more and more of in the press which is sad.

Trouble is, it isn't about how the parents "feel", is it? It should be irrelevant whether the child has parents or not. I'm sure it is horrific and heartbreaking to see your child suffer. I'm sure that many would want to allow their child to die to save it from suffering.

But what of those parents who don't do that, and whose children survive long enough to express their feelings? Do they resent being alive, or do they accept the life they have, pain or not? Those are the questions the court should consider.

It is about a living human-being. The courts must make a decision about a living human-being. They should not make the decision based on the parents' feelings.

Advances in modern medicine mean that these situations are more and more likely. We just have to face the consequences of medical progress. And provide the resources for these children. I know that people will say, well, the NHS is not an unlimited resource, etc. But that is a political decision, rather than a real one. We have, after all, found money for many things which I would not endorse.

What Riven said. I just think that the baby has rights too, am desperately sorry for the parents in this awful situation but am with Penthesileia and Riven on this.

well said riven

"someone has to speak for the voiceless"

isn't that what his dad is doing? There's no nedd for everyone else to get involved insome kind of crusade about it surely?

people can discuss it though, it does have a affect on others

Presumably the doctors have seen an awful lot of vent-dependent people, though?

Mate of mine did a stint in ITU when she was training and was telling me how they counted it a major success when one patient was able to move his eyebrow. (Crashed his motorbike.) No question of withdrawing life support for him - so presumably they wouldn't even think about it if it weren't a real issue for this baby.

but there are lots of people who are vent-dependent, so why is it we're not having these court battles over all of them?

the dr appointed by the father's lawyers has said that it would not be in the baby's interests to have a tracheostomy fitted.

here

sorry couldn't get p[ast the stupid title of the article

they've just announced on the radio that the father has withdrawn his opposition to having the life support turned off.

Very sad but possibly the right decision to spare this child's suffering.

oh, that link is so sad, Wannabe. Poor little love.

the poor father he must be so sad