'Alfie's army' Alder hey protest

Its what they have called themselves so its relevant i feel.

Fair enough - sadly I think the parents as sad as this may be have been very misinformed. They should put a stop to these protests now.
 
As a parent of a little boy who is having an MRI brain scan in 3 weeks, i do understand why the parents are so desperate to not let him go, in their eyes - just as that of Charlie Gard last year - he is their son and they feel it is up to them to "save him"... but there is no excuse for the picketing of the hospital by shouty loud rabble :( We were at Alder Hey last summer for an appt and it was so stressful even going (for what turned out to be something that was fine) so for people who are coming and going at the moment to see and be with their own very sick child, the protesters shoudl think about them as well. Silent vigil protests would still get the media they want, without turning the public against their cause like they are doing right now. I'm scared to death of the scan showing things wrong with my 18 month old, and there's a chance it will, but that is why i do understand what the parents go through in these cases... you feel it's up to you to save your child, to keep them alive, to "help", and when you are so wracked with pre-grief and upset you don't see what a hospital is saying. Having said that though, if anything is wrong with my son it is Royal Oldham hospital that did it during his birth as that labour ward team were a disgrace and they were only meant to use forceps once as they were under special measures for killing a baby previously (national guidelines are 3 attepmts), yet they did it 4 times on my boy, as well as refusing hours of pleas for an emergency csection, we knew something was wrong, they just ignored it all, then by the time they agreed and his heart rate was dropping they found theyd waited too long to do a scetion as he was already too low so they pulled him out, either the forecps, or being starved of oxygen for a short time, one of those will be the cause if the scan shows the cerbral palsy or worse that they think it could be. And i spend every day doing his physio trying to get his leg strength up, trying to get speech going, trying to have fun with his infectious laugh, and hoping his throwing his head to the floor and hitting me will stay away, while i try to keep the worry and the tears inside. And my mother in law died. And we won the bloody league. Very long ramble there that went personal. sorry. but i love my boy, and i do know where teh parents are coming from cos if anyone ever told me they want to stop the ventilator of anyone i love, i would fight them, i would. But my son is going to live to be 100 and be happy and healthy, so that's alright then.

(i need to go to bed)
 
Hope it all works out for you and your little boy .... fingers crossed for you.


As a parent of a little boy who is having an MRI brain scan in 3 weeks, i do understand why the parents are so desperate to not let him go, in their eyes - just as that of Charlie Gard last year - he is their son and they feel it is up to them to "save him"... but there is no excuse for the picketing of the hospital by shouty loud rabble :( We were at Alder Hey last summer for an appt and it was so stressful even going (for what turned out to be something that was fine) so for people who are coming and going at the moment to see and be with their own very sick child, the protesters shoudl think about them as well. Silent vigil protests would still get the media they want, without turning the public against their cause like they are doing right now. I'm scared to death of the scan showing things wrong with my 18 month old, and there's a chance it will, but that is why i do understand what the parents go through in these cases... you feel it's up to you to save your child, to keep them alive, to "help", and when you are so wracked with pre-grief and upset you don't see what a hospital is saying. Having said that though, if anything is wrong with my son it is Royal Oldham hospital that did it during his birth as that labour ward team were a disgrace and they were only meant to use forceps once as they were under special measures for killing a baby previously (national guidelines are 3 attepmts), yet they did it 4 times on my boy, as well as refusing hours of pleas for an emergency csection, we knew something was wrong, they just ignored it all, then by the time they agreed and his heart rate was dropping they found theyd waited too long to do a scetion as he was already too low so they pulled him out, either the forecps, or being starved of oxygen for a short time, one of those will be the cause if the scan shows the cerbral palsy or worse that they think it could be. And i spend every day doing his physio trying to get his leg strength up, trying to get speech going, trying to have fun with his infectious laugh, and hoping his throwing his head to the floor and hitting me will stay away, while i try to keep the worry and the tears inside. And my mother in law died. And we won the bloody league. Very long ramble there that went personal. sorry. but i love my boy, and i do know where teh parents are coming from cos if anyone ever told me they want to stop the ventilator of anyone i love, i would fight them, i would. But my son is going to live to be 100 and be happy and healthy, so that's alright then.

(i need to go to bed)
 
As a parent of a little boy who is having an MRI brain scan in 3 weeks, i do understand why the parents are so desperate to not let him go, in their eyes - just as that of Charlie Gard last year - he is their son and they feel it is up to them to "save him"... but there is no excuse for the picketing of the hospital by shouty loud rabble :( We were at Alder Hey last summer for an appt and it was so stressful even going (for what turned out to be something that was fine) so for people who are coming and going at the moment to see and be with their own very sick child, the protesters shoudl think about them as well. Silent vigil protests would still get the media they want, without turning the public against their cause like they are doing right now. I'm scared to death of the scan showing things wrong with my 18 month old, and there's a chance it will, but that is why i do understand what the parents go through in these cases... you feel it's up to you to save your child, to keep them alive, to "help", and when you are so wracked with pre-grief and upset you don't see what a hospital is saying. Having said that though, if anything is wrong with my son it is Royal Oldham hospital that did it during his birth as that labour ward team were a disgrace and they were only meant to use forceps once as they were under special measures for killing a baby previously (national guidelines are 3 attepmts), yet they did it 4 times on my boy, as well as refusing hours of pleas for an emergency csection, we knew something was wrong, they just ignored it all, then by the time they agreed and his heart rate was dropping they found theyd waited too long to do a scetion as he was already too low so they pulled him out, either the forecps, or being starved of oxygen for a short time, one of those will be the cause if the scan shows the cerbral palsy or worse that they think it could be. And i spend every day doing his physio trying to get his leg strength up, trying to get speech going, trying to have fun with his infectious laugh, and hoping his throwing his head to the floor and hitting me will stay away, while i try to keep the worry and the tears inside. And my mother in law died. And we won the bloody league. Very long ramble there that went personal. sorry. but i love my boy, and i do know where teh parents are coming from cos if anyone ever told me they want to stop the ventilator of anyone i love, i would fight them, i would. But my son is going to live to be 100 and be happy and healthy, so that's alright then.

(i need to go to bed)
My thoughts are with you and your family hope everything works out ok
 
Such a sad state of affairs i dont kniw what i would do if i was in the same situation .but i do know i would not want that rabble supporting me outside the hospital .they are an embarrasment .Storm the hospital ffs then what .So stressfull being in hospital without that rent a mob shouting abuse
 
I’ve been in the horrible position of having to agree to my child’s life support system being turned off so I’m in more of a position to judge than most. Even then, I’m not going to judge the parents over that because I’m not in their shoes. My daughter had been starved of oxygen and had suffered a cardiac arrest during the birth. She was incapable of breathing on her own or maintaining a heartbeat without cardiac massage so it was an awful but straightforward decision. I also have friends who had a boy who had something called Tay Sachs Disease, which is a degenerative neurological condition seemingly not dissimilar to the one Alfie has. He got progressively worse and died when he was 5 years old. It wasn't a pleasant pathway either. So I suspect that poor young boy hasn't any realistic prospect of having any sort of life that doesn't involve an early death. There's no known cure for his condition, which they're not even sure about, but there's a potential treatment that could possibly prolong his life for a short while.

Having been there, a part of me obviously has sympathy for the parents for the pain they're going through but another, far larger part of me thinks “What are you hoping to gain from this? Let it go”. Yet if they think there’s a hope of salvaging something then I also think that Alder Hey should say “Fine. If that’s what you want to do then do it. Let the Italian doctors come to get him and then he’s their and your responsibility”. Who are they doing this for - Alfie or themselves? I suspect it's the latter. Sometimes, however much it hurts, you have to listen to advice that may not be what you want to hear.

But no way should their supporters be impacting normal life at Alder Hey. That's completely out of order & I've lost all respect for the parents, who seem to be encouraging this, whether implicitly or explicitly. I can understand them wanting the best for their child but not completely abandoning their dignity to pursue that.

Think you've hit the nail on the head with the highlighted part.

I know it can't be the easiest decision to make but i can't get my head round what they're actually trying to achieve. The whole saga has been a sorry episode and, imo, they should have let him die with dignity, dragging this all out in front of the worlds media just smacks of me, me, me.

The father has had me actually screaming at the news when i see him and some of his comments.
 
As a parent of a little boy who is having an MRI brain scan in 3 weeks, i do understand why the parents are so desperate to not let him go, in their eyes - just as that of Charlie Gard last year - he is their son and they feel it is up to them to "save him"... but there is no excuse for the picketing of the hospital by shouty loud rabble :( We were at Alder Hey last summer for an appt and it was so stressful even going (for what turned out to be something that was fine) so for people who are coming and going at the moment to see and be with their own very sick child, the protesters shoudl think about them as well. Silent vigil protests would still get the media they want, without turning the public against their cause like they are doing right now. I'm scared to death of the scan showing things wrong with my 18 month old, and there's a chance it will, but that is why i do understand what the parents go through in these cases... you feel it's up to you to save your child, to keep them alive, to "help", and when you are so wracked with pre-grief and upset you don't see what a hospital is saying. Having said that though, if anything is wrong with my son it is Royal Oldham hospital that did it during his birth as that labour ward team were a disgrace and they were only meant to use forceps once as they were under special measures for killing a baby previously (national guidelines are 3 attepmts), yet they did it 4 times on my boy, as well as refusing hours of pleas for an emergency csection, we knew something was wrong, they just ignored it all, then by the time they agreed and his heart rate was dropping they found theyd waited too long to do a scetion as he was already too low so they pulled him out, either the forecps, or being starved of oxygen for a short time, one of those will be the cause if the scan shows the cerbral palsy or worse that they think it could be. And i spend every day doing his physio trying to get his leg strength up, trying to get speech going, trying to have fun with his infectious laugh, and hoping his throwing his head to the floor and hitting me will stay away, while i try to keep the worry and the tears inside. And my mother in law died. And we won the bloody league. Very long ramble there that went personal. sorry. but i love my boy, and i do know where teh parents are coming from cos if anyone ever told me they want to stop the ventilator of anyone i love, i would fight them, i would. But my son is going to live to be 100 and be happy and healthy, so that's alright then.

(i need to go to bed)

A brilliant and moving post. Your son has a big scottish bastard cheering him on. My sons are in their twenties now but that feeling of protecting them never leaves. All the best to your beautiful boy you and your wife.
 

Don't have an account? Register now and see fewer ads!

SIGN UP
Back
Top
  AdBlock Detected
Bluemoon relies on advertising to pay our hosting fees. Please support the site by disabling your ad blocking software to help keep the forum sustainable. Thanks.