winnie&bezza Posted July 7, 2017 Report Share Posted July 7, 2017 I didn't realise that only 6 people in the world have his condition. Link to comment Share on other sites More sharing options...
fortune Posted July 7, 2017 Report Share Posted July 7, 2017 It could be that it is all a lot of buck passing. "We don't want the job of being the bad guy turning off the machines". "You have him and let him khark it on your patch and watch". "You take him and spend/waste your resources on him". Life and death politics. Your damned if you do and damned if you don't. Years ago the parents would have been told that he had slipped away peacefully which would have squared the situation. Link to comment Share on other sites More sharing options...
four-wheel-drive Posted July 8, 2017 Report Share Posted July 8, 2017 (edited) id hardly call them selfish and nasty. The facts are for lots of reasons the pore little thing would be better off dead no more suffering no more pain but his parents have not got the guts to admit it in the end it is him paying the price not them they have to let go for his own good. Edited July 8, 2017 by four-wheel-drive Link to comment Share on other sites More sharing options...
Bigbob Posted July 8, 2017 Report Share Posted July 8, 2017 what im making of it the parents are in denial , the mother said if he went to America and had this treatment he could be a normal little boy . The hospital are saying hes severely brain damaged Link to comment Share on other sites More sharing options...
mel b3 Posted July 8, 2017 Report Share Posted July 8, 2017 The facts are for lots of reasons the pore little thing would be better off dead no more suffering no more pain but his parents have not got the guts to admit it in the end it is him paying the price not them they have to let go for his own good. Again , not got the guts probably isnt the nicest way of putting things. Im not a doctor , and thank god im not a parent with a child is this position. Back in 1992 , my youngest sister gave birth to twins, prematurely. They were on life support over at birmingham childrens hospital for around a month , in the end , the doctors advised my sister that neither of them could or would survive , and even if they did survive , they would never lead any kind of normal life , and that they would never even walk and talk , my sister agreed that the doctors could stop all treatment and leave them to die. At that point , my mom and dad stepped in , both agreed that they had seen enough life in the twins for treatment to carry on , and that the time to stop trying hadnt arrived yet , the doctors were very much against this , but my parents convinced my sister that the fight should carry on , eventually and reluctantly , the doctors allowed my parents and sister to bring the twins home to die. Over the following months, they received 24hr a day care from my mom dad and sister. Its a long and boring story , but the end result is that , my neice is sitting at home , in full working order , and happily looking after her own daughter , and my nephew has just popped in to pick up my lad for a day in the sunshine by the river. Its an impossible position for all concerned , and it may not have a happy ending , but the moral of the story is, it aint over till its over. Link to comment Share on other sites More sharing options...
Ollieollie Posted July 8, 2017 Report Share Posted July 8, 2017 The facts are for lots of reasons the pore little thing would be better off dead no more suffering no more pain but his parents have not got the guts to admit it in the end it is him paying the price not them they have to let go for his own good. Easy to say when not in there shoes Link to comment Share on other sites More sharing options...
Scully Posted July 8, 2017 Report Share Posted July 8, 2017 To suggest they are nasty or have no guts is harsh; they are grieving for their still alive kid and desperately hanging onto hope where in fact there is none The child will know no different; and given his condition I doubt will even be aware of his existence. His life consists of responses to stimulus either theough pain or the caresses of his parents, and perhaps not even that. I can totally understand their position but there comes a time when you just have to say enough is enough. No one to blame; no one responsible; it's just life, sometimes wonderful sometimes cruel. No parent should ever have to bury their child, but they will in time come to realise it's just life. Link to comment Share on other sites More sharing options...
oldypigeonpopper Posted July 13, 2017 Report Share Posted July 13, 2017 hello, watching the latest on this difficult time for his parents, i cannot imagine what they are having to decide but i hope it will be the best for this little chap Link to comment Share on other sites More sharing options...
Scully Posted July 13, 2017 Report Share Posted July 13, 2017 hello, watching the latest on this difficult time for his parents, i cannot imagine what they are having to decide but i hope it will be the best for this little chapI'm still of the opinion the best they can do for the lad is let him go. Link to comment Share on other sites More sharing options...
oldypigeonpopper Posted July 13, 2017 Report Share Posted July 13, 2017 I'm still of the opinion the best they can do for the lad is let him go. hello, i agree with you Scully but how hard it must be i cannot comprehend Link to comment Share on other sites More sharing options...
four-wheel-drive Posted July 14, 2017 Report Share Posted July 14, 2017 Easy to say when not in there shoes To true why do they just not say ok take him to America and let them do what they can he will no doubt die in the end or if he does survive that will be it he will not have a life it will he may be alive but if that is life you can keep it. Link to comment Share on other sites More sharing options...
Scully Posted July 14, 2017 Report Share Posted July 14, 2017 The American specialist states the treatment could provide a 10% improvement in the lads condition, which isn't much of an improvement in anyone's quality of life given the severity of his condition. Would he even be self aware with a 10% improvement? I seriously doubt it but I'm no expert. In the nicest possible terms the specialists will use the lad as a guinea pig to see what can be learned for future people in a similar condition; without such cases how can they learn anything? I just wonder how much more the poor lad has to endure before they finally pull the plug. Link to comment Share on other sites More sharing options...
fortune Posted July 14, 2017 Report Share Posted July 14, 2017 The American specialist states the treatment could provide a 10% improvement in the lads condition, which isn't much of an improvement in anyone's quality of life given the severity of his condition. Would he even be self aware with a 10% improvement? I seriously doubt it but I'm no expert. In the nicest possible terms the specialists will use the lad as a guinea pig to see what can be learned for future people in a similar condition; without such cases how can they learn anything? I just wonder how much more the poor lad has to endure before they finally pull the plug. And mop up a ton of money out of public funding please for consultation and fees ect. When the public interest and money have gone the parents will be informed that, although they gave it their best shot there is no more they can do. Link to comment Share on other sites More sharing options...
loriusgarrulus Posted July 17, 2017 Report Share Posted July 17, 2017 I am glad I am not in the position of his parents. They are not cruel or uncaring. Just parents who have a child they love who they want to give the best chance medical science can give. We can only know what the papers choose to publish. We can only say what we think we would do. We cannot put ourselves in their shoes. I have only had to make the final decision on pets being put down and that was hard enough and heartbreaking. Who can tell if some of the hospital decisions are based on resources and finance for the future. Who can know what the final outcome can be if everything is tried. I cannot decide if what they are trying to do is right or wrong, but I would not condem them for it. Link to comment Share on other sites More sharing options...
Sian Posted July 17, 2017 Report Share Posted July 17, 2017 (edited) I am glad I am not in the position of his parents. They are not cruel or uncaring. Just parents who have a child they love who they want to give the best chance medical science can give. We can only know what the papers choose to publish. We can only say what we think we would do. We cannot put ourselves in their shoes. I have only had to make the final decision on pets being put down and that was hard enough and heartbreaking. Who can tell if some of the hospital decisions are based on resources and finance for the future. Who can know what the final outcome can be if everything is tried. I cannot decide if what they are trying to do is right or wrong, but I would not condem them for it. I agree Edited July 17, 2017 by Sian Link to comment Share on other sites More sharing options...
Scully Posted July 18, 2017 Report Share Posted July 18, 2017 I am glad I am not in the position of his parents. They are not cruel or uncaring. Just parents who have a child they love who they want to give the best chance medical science can give. We can only know what the papers choose to publish. We can only say what we think we would do. We cannot put ourselves in their shoes. I have only had to make the final decision on pets being put down and that was hard enough and heartbreaking. Who can tell if some of the hospital decisions are based on resources and finance for the future. Who can know what the final outcome can be if everything is tried. I cannot decide if what they are trying to do is right or wrong, but I would not condem them for it. Believe me, I'm not condemning the parents at all. They are clinging onto hope beyond hope, which is what any parent would do, but there does come a time when enough is enough, and if they don't feel that time is now I'm not sure when they will. im wondering how they will feel if a 10% improvement frees him from life support dependence, and after catering to his every need; feeding, washing, dressing, bathing,toilet, carrying him to and from bed, the installation of lifting gear as he grows and gets too heavy to lift;the constant health visits; ,the likelihood of frequent and painful seizures and fits, and seeing the pain he goes through with each one, and the constant and non stop drain on their energy and health ( despite respite visits ) whether they will then begin to perhaps think it would have been kinder to let him go. I feel for them, I really do, but they need to let him go. Link to comment Share on other sites More sharing options...
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