Discussion
My son has been going to GOSH sice he was two years old, he is now 6. Every member of staff we have had dealings with, from the surgeon why carried ouf life changing cranial surgery, down to every nurse, have been completely amazing.
I feel so sorry for the parents and the poor child and who can blame them for what they are doing, but I also feel so sorry for the hospital, who ars being made to look like the villains.
They get the second highest charitable donations of any hospital in the uk and they receive all royalties from anything connected to Peter Pan, but the money is not endless, i dont know how long they can keep the baby 'alive' for and it is so sad that the matter has to resolved in the courts.
Even if permission is given, is the poor lad capable of travelling anywhere?
No winners here...
I feel so sorry for the parents and the poor child and who can blame them for what they are doing, but I also feel so sorry for the hospital, who ars being made to look like the villains.
They get the second highest charitable donations of any hospital in the uk and they receive all royalties from anything connected to Peter Pan, but the money is not endless, i dont know how long they can keep the baby 'alive' for and it is so sad that the matter has to resolved in the courts.
Even if permission is given, is the poor lad capable of travelling anywhere?
No winners here...
Wiccan of Darkness said:
Damn, I'm so sorry to hear that. No apologies for the rant, either. Probably a good place to vent your spleen. Everyone calls me wiccy btw.
Again, if there's any information you want, feel free to PM/email me. Did GOSH or your GP refer you to a genetic counselor, if not bug the GP.
I feel as though the parents are postponing the inevitable and thus prolonging their own pain; I also wonder what further support GOSH are offering the parents, this god awful situation is dragging on. The current damage cannot be reversed, and it's personally frustrating to hear people use phrases like miracle life saving treatment when I know very well that it won't be life-saving, it will be death-delaying.
I didn't think I'd strayed into rant territory but it's a fine line Again, if there's any information you want, feel free to PM/email me. Did GOSH or your GP refer you to a genetic counselor, if not bug the GP.
I feel as though the parents are postponing the inevitable and thus prolonging their own pain; I also wonder what further support GOSH are offering the parents, this god awful situation is dragging on. The current damage cannot be reversed, and it's personally frustrating to hear people use phrases like miracle life saving treatment when I know very well that it won't be life-saving, it will be death-delaying.
I'm not posting this to garner any sympathy but more to offer the POV of someone who has been in a similar situation. The second paragraph I've quoted makes a good point and in fact one which at the time of my own experience I said a few times. In some ways for me it was the point; the delaying the inevitable.
At the time I looked at it this way; there I am with an ill baby, in what is a world class children's hospital. It's the best place to be, when you are in the worst situation. Exhaustive testing, analysis and machinery used all in the pursuit of helping my son. A humbling experience.
All the tests, people we met (and there were dozens of medical staff over that few week period) to the consultants and the head honchos - they were all compassionate, professional and helpful. How you could be in that situation and decide to take the path these people have taken is, to me, both frightening and confusing.
I struggle to see a good outcome for them after this has happened - it's a tough time, and many people don't manage the grieving-becoming-wallowing thing well, and it rules their lives for ever more. It can make and break relationships. We rallied and strengthened; many do not.
On the testing, we had excellent follow up care from GOSH and have, in the 35 months since no.1 passed away, gone on to have not one but two healthy boys (now 20mths and 2mths).
Had we been of the mindset of the parents on this case, I do not believe that would have been possible.
SydneyBridge said:
My son has been going to GOSH sice he was two years old, he is now 6. Every member of staff we have had dealings with, from the surgeon why carried ouf life changing cranial surgery, down to every nurse, have been completely amazing.
I feel so sorry for the parents and the poor child and who can blame them for what they are doing, but I also feel so sorry for the hospital, who ars being made to look like the villains.
They get the second highest charitable donations of any hospital in the uk and they receive all royalties from anything connected to Peter Pan, but the money is not endless, i dont know how long they can keep the baby 'alive' for and it is so sad that the matter has to resolved in the courts.
Even if permission is given, is the poor lad capable of travelling anywhere?
No winners here...
Echo all of this after having dealings with the hospital through my son.I feel so sorry for the parents and the poor child and who can blame them for what they are doing, but I also feel so sorry for the hospital, who ars being made to look like the villains.
They get the second highest charitable donations of any hospital in the uk and they receive all royalties from anything connected to Peter Pan, but the money is not endless, i dont know how long they can keep the baby 'alive' for and it is so sad that the matter has to resolved in the courts.
Even if permission is given, is the poor lad capable of travelling anywhere?
No winners here...
The level of care from all staff that I have been in contact with has been superb
Their first priority is to the child and to limit their suffering as much as possible
I would trust their judgement over any other medical institute especially one that seems prepared to administer a drug which hasn't even been tested on mice!
BlackLabel said:
What's interesting about that is the picture with the "reverend" inside the hospital ward. That's unusual to see an up to date picture, usually the pictures they use are from several months ago. In this pic Charlie doesn't look well 
g
Sadly, not a lot of dignity in that pic, is there?
15 years ago, this poor kid would have been allowed to slip away quietly, and with dignity, and not be paraded around the press with this self promoting delusionist gurning with his ugly mug in the papers. But with the rise of the Go fundme pages, there's a bit too much money involved now and such people are able to perpetuate this nonsense.
Sad.
kev1974 said:
BlackLabel said:
What's interesting about that is the picture with the "reverend" inside the hospital ward. That's unusual to see an up to date picture, usually the pictures they use are from several months ago. In this pic Charlie doesn't look well 15 years ago, this poor kid would have been allowed to slip away quietly, and with dignity, and not be paraded around the press with this self promoting delusionist gurning with his ugly mug in the papers. But with the rise of the Go fundme pages, there's a bit too much money involved now and such people are able to perpetuate this nonsense.
Sad.
I've been following this situation. It's obviously morbid but it's something that gets to you. It seems that the child is almost forgotten at times.
Everyone else is a villain depending on whom you listen to or read about.
I feel sorry for the parents and I too am thankful I am not in their position. I feel for the hospital; as others have said, it is painted black by most yet it appears to be the one that is thinking entirely of the child. The courts have been brave enough to make a decision which is legally correct but, it could be argued, is wrong.
My wife and I were talking about this this morning but she had to stop because she got upset. We agreed that there was no correct answer.
I don't think the parents are doing what is best for the child, nor for them come to that. But what do I know? My morals are my own.
I think these vicars are deplorable. I'm no fan of religions and their behaviour seems to be mischievous at best.
One thing I am certain of is that experimenting on terminally ill children should remain something that the Victorians would have banned.
I've got no answer of course. Who has. I just wanted to post something to get it off my chest.
Everyone else is a villain depending on whom you listen to or read about.
I feel sorry for the parents and I too am thankful I am not in their position. I feel for the hospital; as others have said, it is painted black by most yet it appears to be the one that is thinking entirely of the child. The courts have been brave enough to make a decision which is legally correct but, it could be argued, is wrong.
My wife and I were talking about this this morning but she had to stop because she got upset. We agreed that there was no correct answer.
I don't think the parents are doing what is best for the child, nor for them come to that. But what do I know? My morals are my own.
I think these vicars are deplorable. I'm no fan of religions and their behaviour seems to be mischievous at best.
One thing I am certain of is that experimenting on terminally ill children should remain something that the Victorians would have banned.
I've got no answer of course. Who has. I just wanted to post something to get it off my chest.
Boosted LS1 said:
Wiccan,
Thanks for the informative posts. I'm a bit dense sometimes. What does ATP stand for? I've looked and the answer's probably staring me in the face.
ATP:Thanks for the informative posts. I'm a bit dense sometimes. What does ATP stand for? I've looked and the answer's probably staring me in the face.
Short for adenosine triphosphate. An organic compound, C10H16N5O13P3, that is composed of adenosine and three phosphate groups. It serves as a source of energy for many metabolic processes. ATP releases energy when it is broken down into ADP by hydrolysis during cell metabolism.
https://en.wikipedia.org/wiki/Adenosine_triphospha...
The Reverend looks like he's attached himself to the parents when they are at their most vulnerable and are using them to spread his message.
One of the photos shows him talking to the father (who looks absolutely broken) or should I say he looks like he issuing orders and directions to him.
This one
It's becoming a circus now with the parents clinging to any hope no matter how small.
I don't blame them but it seems there are others who wish to take advantage for whatever reasons.
GOSH have acted with the utmost respect in this matter throughout.
One of the photos shows him talking to the father (who looks absolutely broken) or should I say he looks like he issuing orders and directions to him.
This one
It's becoming a circus now with the parents clinging to any hope no matter how small.
I don't blame them but it seems there are others who wish to take advantage for whatever reasons.
GOSH have acted with the utmost respect in this matter throughout.
My step-mother asked me yesterday what I thought about this situation and having had a daughter in hospital with a (albeit temporary) life threatening condition I gave, I thought, a reasoned reply that I could understand a little of what the parents were going through and them wanting every option explored to resolve illness, alleviate suffering etc was only natural. But that if staff, at what I understand is one of best hospitals in the world, say that the child is suffering and will continue to do so and is not likely to make any form of meaningful recovery or enjoy any sort of quality of life then I'd be looking at the best interest of said child ahead of my own desire to see them live. I added that I would of course lay down my life for either of my children without hesitation if the need arose.
Her response was "I've a mind to go down there and unplug the little bugger myself and sort the parents out. Wasting time and money when it could be going to others in more need" but then she is, I've discovered over time, not a very nice person.
Her response was "I've a mind to go down there and unplug the little bugger myself and sort the parents out. Wasting time and money when it could be going to others in more need" but then she is, I've discovered over time, not a very nice person.
ModernAndy said:
A question for Wiccy and I hope this doesn't sound disrespectful; In the pictures Charlie looks like quite a chunky baby with more than a good bit of weight on him. Is this a part of the condition? i.e. there's no muscle so everything gets converted to fat?
It doesn't look like fat to me but without prodding and poking I couldn't confirm this, but it's more likely a fluid build up within the tissues, particularly muscle tissue. I haven't seen any recent pictures until just now, the puffiness around the eyes suggests it's oedema.Oedema, or fluid build up within tissues, is always a bad sign. Simple things like infection, insect bites etc causes it, but knowing Charlies condition it's a clear indication either protein is being released (liver failure) or more likely gradual failure of ion channels due to low levels of ATP (ATP is adenosine triphosphate, the last phosphate group has the energy to make things happen so breaks up to adenosine diphosphate, a phosphate group and some energy to make something happen). It's complicated to explain all the hows and whys and lunch break is over so will pop in tonight to answer more questions when I get home.
Fluid will start building up in his lungs now, and if this is the case, normal diuretics won't work due to the kidney failure and even with intervention I suspect the next 2 weeks will be his last.
He's 11 months old, and resembles a 3 month old. They're back in the high court today looking for more snake oil.
arfursleep said:
Her response was "I've a mind to go down there and unplug the little bugger myself and sort the parents out. Wasting time and money when it could be going to others in more need" but then she is, I've discovered over time, not a very nice person.
I'm assuming she didn't have a career in the diplomatic service!jke11y said:
I have been thinking about this story a lot in the last few days, and hadn't spotted this thread until now to air some thoughts. I have also been discussing it with my other half as I wasn't sure if my (our) experience was over-ruling my normally fairly sensible mind.
A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
I agree with you and although the outcome for us was different it didn't for one moment cross my mind that what the doctors were telling my wife and I about my daughter was not for the best.A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
She was born with a massive brain injury, had to be resuscitated many times in the first few hours of her life and was effectively not given a lot of hope for the future. Couldn't feed and more importantly couldn't cough or swallow. Christmas Eve we were told (or it was strongly recommended ) that it was better to let nature take it's course if the nurses had to step in the next time she had an episode. A pretty bleak xmas that was.
At no point did my wife and I decide that we knew best and wanted to go against the advice we were given, we were jsut grateful for the time we thought we had. As it happens my daughter gave a metaphorical v sign to her injuries and battled back and we now have a very determined and stubborn 8 year old daughter that although suffers from cerebral palsy and the difficulties that brings, certainly does her best to live life to the full.
All I wanted to say there must be more to this that what is reported, it is a very grim time for all kids in hospital, I dread to think of the parents mental state at this moment. It is a terrible situation to be in.
TwigtheWonderkid said:
arfursleep said:
Her response was "I've a mind to go down there and unplug the little bugger myself and sort the parents out. Wasting time and money when it could be going to others in more need" but then she is, I've discovered over time, not a very nice person.
I'm assuming she didn't have a career in the diplomatic service!IMO they should have turned life support off when they had the chance or allow the parents what they want - which is probably what they are now aiming for.
GreatGranny said:
The Reverend looks like he's attached himself to the parents when they are at their most vulnerable and are using them to spread his message.
One of the photos shows him talking to the father (who looks absolutely broken) or should I say he looks like he issuing orders and directions to him.
This one
It's becoming a circus now with the parents clinging to any hope no matter how small.
I don't blame them but it seems there are others who wish to take advantage for whatever reasons.
GOSH have acted with the utmost respect in this matter throughout.
I blame them now, for all this media circus and for prolonging this boy's suffering. One of the photos shows him talking to the father (who looks absolutely broken) or should I say he looks like he issuing orders and directions to him.
This one
It's becoming a circus now with the parents clinging to any hope no matter how small.
I don't blame them but it seems there are others who wish to take advantage for whatever reasons.
GOSH have acted with the utmost respect in this matter throughout.
This child has rights. It's those rights ONLY that should be being focussed on. Not the parent's rights, not Trump or the Pope, or this religious loon.
In the face of all this medical evidence, (or even just what a well educated layman can find out), he has no chance. Let him go, with dignity.
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