| Sorry if old thread / news but I've only just caught up with this ill baby case 08:17 - Jul 17 with 3198 views | Lord_Lucan |
Am I right that thinking the kid will always be deaf, blind, brain damaged and bed bound?
What is the point? Blooming cruel to keep him alive no? |  |
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| Sorry if old thread / news but I've only just caught up with this ill baby case on 08:21 - Jul 17 with 3174 views | WD19 |
That was the considered and impartial view of the professionals at GOSH, yes. Doesn't make it any easier for the parents though. |  | | |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 08:22 - Jul 17 with 3173 views | itfcjoe |
I think that is the case personally, but I get emotional daily updates on this from Mrs itfcjoe - we were having our baby at a similar time and she struggles with this one.
Not sure where it is currently, but think last update was they want to take the baby home so it can pass away there. It's a really sad case all round. |  |
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| Sorry if old thread / news but I've only just caught up with this ill baby case on 08:22 - Jul 17 with 3170 views | Steve_M |
None sadly. Although his parents desire to seize on any tiny amount of hope is completely understandable, it does seem as if too many others aren't involved for the right reasons.
The statement from GOSH is a clear summing up of the situation, well worth reading.
http://www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard |  |
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| Sorry if old thread / news but I've only just caught up with this ill baby case on 08:24 - Jul 17 with 3154 views | ElderGrizzly |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 08:22 - Jul 17 by itfcjoe |
I think that is the case personally, but I get emotional daily updates on this from Mrs itfcjoe - we were having our baby at a similar time and she struggles with this one.
Not sure where it is currently, but think last update was they want to take the baby home so it can pass away there. It's a really sad case all round. |
There is a specialist coming over from the USA to visit him in hospital today and then he'll report to the judge as to whether the alternative treatment holds any hope.
They still want to take him to the USA for treatment, but judge will make final call on 25th July apparently
Incredibly sad and with my little one due in a couple of months, i've no idea how i'd react in their situation :( [Post edited 17 Jul 2017 8:26]
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| Sorry if old thread / news but I've only just caught up with this ill baby case on 08:27 - Jul 17 with 3132 views | itfcjoe |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 08:24 - Jul 17 by ElderGrizzly |
There is a specialist coming over from the USA to visit him in hospital today and then he'll report to the judge as to whether the alternative treatment holds any hope.
They still want to take him to the USA for treatment, but judge will make final call on 25th July apparently
Incredibly sad and with my little one due in a couple of months, i've no idea how i'd react in their situation :( [Post edited 17 Jul 2017 8:26]
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It's heartbreaking stuff to see, especially as the baby was home and seemingly all fine before this happened. Something similar has happened to a friend of my wife's whose baby is a few weeks older but fortunately was caught in time when they realised her liver and kidney's weren't functioning at 2-3 weeks old. Hugely tough situation though | |
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| Sorry if old thread / news but I've only just caught up with this ill baby case on 08:59 - Jul 17 with 3047 views | Westover |
Very sad but I would think if you were the child yourself would you want to live I know I wouldn't. |  | | |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:03 - Jul 17 with 3033 views | Lord_Lucan |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 08:59 - Jul 17 by Westover |
Very sad but I would think if you were the child yourself would you want to live I know I wouldn't. |
Of course I wouldn't and If I were the parent I wouldn't want the child to live either. I appreciate it must be very hard but how could you basically choose that quality of life for your child.
Maybe I'm heartless and old fashioned but surely the sensible thing to do is spend a while with the child and reflect and then as hard as it is - try and move on. | |
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| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:05 - Jul 17 with 3019 views | Basuco |
My first thought was, at what point is the care of a child taken away from the parents to "prevent" treatment elsewhere in the World? |  | | |
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| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:12 - Jul 17 with 3005 views | connorscontract |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:03 - Jul 17 by Lord_Lucan |
Of course I wouldn't and If I were the parent I wouldn't want the child to live either. I appreciate it must be very hard but how could you basically choose that quality of life for your child.
Maybe I'm heartless and old fashioned but surely the sensible thing to do is spend a while with the child and reflect and then as hard as it is - try and move on. |
The difficulty here is that, through crowdfunding, they raised an "impossible" amount of money, which then gave them hope. It gives them the "option" that others wouldn't have, because the "best use of scarce resources" ethical argument doesn't apply here, so it is simply down to whether Charlie is suffering now, in which case any lengthening of life is prolonging suffering, or whether he is showing any positive responses, in which case lengthening his life can be seen as having meaningful value, and then the percentage chance of any gene therapy being successful.
If, as some expert evidence for the family has suggested, the percentage chance of a positive improvement is as high as 10% then I can understand the family clutching at that.
The money is available, the doctor and hospital in the US are ready and willing, and you've been told there's a 10% chance- which parent could live with themselves if they didn't do absolutely all they could to give him that chance? | | | |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:16 - Jul 17 with 2998 views | Basuco |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:03 - Jul 17 by Lord_Lucan |
Of course I wouldn't and If I were the parent I wouldn't want the child to live either. I appreciate it must be very hard but how could you basically choose that quality of life for your child.
Maybe I'm heartless and old fashioned but surely the sensible thing to do is spend a while with the child and reflect and then as hard as it is - try and move on. |
A few years back some friends had the news at 12 weeks that their unborn child had Down syndrome and had to decide how to proceed. Awful decision to have to make. | | | |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:38 - Jul 17 with 2955 views | Lord_Lucan |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:16 - Jul 17 by Basuco |
A few years back some friends had the news at 12 weeks that their unborn child had Down syndrome and had to decide how to proceed. Awful decision to have to make. |
Yes it is.
Of course no one can answer until they are in that situation but I am pretty certain I would carry on as normal. One of my best mates when I was at school had three fostered down syndrome brothers and they were great kids, I think this case is entirely different but I appreciate where you are coming from. | |
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| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:41 - Jul 17 with 2947 views | BlueBadger |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:05 - Jul 17 by Basuco |
My first thought was, at what point is the care of a child taken away from the parents to "prevent" treatment elsewhere in the World? |
At the point in which it can be demonstrated that it is REALLY not in their best interests. |  |
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| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:44 - Jul 17 with 2937 views | BlueBadger |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 08:24 - Jul 17 by ElderGrizzly |
There is a specialist coming over from the USA to visit him in hospital today and then he'll report to the judge as to whether the alternative treatment holds any hope.
They still want to take him to the USA for treatment, but judge will make final call on 25th July apparently
Incredibly sad and with my little one due in a couple of months, i've no idea how i'd react in their situation :( [Post edited 17 Jul 2017 8:26]
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Point of order: it's not an 'alternative treatment' that they're desperate for, it's an experimental one. So experimental in fact, that it hasn't even been tested on rodents. It's not curative in nature, either and the guy behind it only gives himself a 1-in-10 chance of success and that's before he's even examined the poor little lad who, after 8 months in critical care, is likely to be enormously weakened and not have the physical reserve to survive a lengthy and dangerous transfer to the United states, let alone 'treatment'.
And even if it is successful, what then? As I've alluded to above, he's likely to be so weakened already that he'll be unable to survive without round-the-clock, specialist level 3 care*
It's equally saddening and frustrating that his family(and by extension their supporters) seem unable to see that the most likely outcome for all of this is that his death is being prolonged rather than life being extended.
* - acute care levels defined here - http://www.datadictionary.nhs.uk/data_dictionary/attributes/c/cou/critical_care_ [Post edited 17 Jul 2017 13:31]
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| Sorry if old thread / news but I've only just caught up with this ill baby case on 10:31 - Jul 17 with 2854 views | Basuco |
| Sorry if old thread / news but I've only just caught up with this ill baby case on 09:44 - Jul 17 by BlueBadger |
Point of order: it's not an 'alternative treatment' that they're desperate for, it's an experimental one. So experimental in fact, that it hasn't even been tested on rodents. It's not curative in nature, either and the guy behind it only gives himself a 1-in-10 chance of success and that's before he's even examined the poor little lad who, after 8 months in critical care, is likely to be enormously weakened and not have the physical reserve to survive a lengthy and dangerous transfer to the United states, let alone 'treatment'.
And even if it is successful, what then? As I've alluded to above, he's likely to be so weakened already that he'll be unable to survive without round-the-clock, specialist level 3 care*
It's equally saddening and frustrating that his family(and by extension their supporters) seem unable to see that the most likely outcome for all of this is that his death is being prolonged rather than life being extended.
* - acute care levels defined here - http://www.datadictionary.nhs.uk/data_dictionary/attributes/c/cou/critical_care_ [Post edited 17 Jul 2017 13:31]
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My sister had experimental treatment 56 years ago, she was born with blue baby syndrome, three previous babies had died after the treatment previously at the hospital but after being christened at 1 day old she pulled through for a full life with no ongoing complications or further treatment. At the time it was considered not treatable, now the mother is given a simple injection after giving birth that prevents further babies having a problem, but I would add that in the OP case as far as I have read about it, I would agree with the courts. As a side issue Mum had very very bad morning sickness and her GP decided against prescribing the new "wonder" sickness drug Thalidomide and stuck with a previous one that worked. | | | |
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