Charlie Gard Case 4

[LovelyBath77]

A new thread to follow on from the others about this case

Hi, I have been reading this thread and dipping in and out of news articles about the case (as it's quite difficult to read.) I have also had a quick glance at the FB Charlie's Army page and, my god, it's disturbing.

The whole situation is so heartbreaking but I think the CA's people, most of whom seem to have no idea, need to give themselves a stern talking to. They are making a horrific situation even worse, which is almost impossible.

I daren't look at the American one in case it's worse!

Our first daughter was born with a partial deletion of chromosome 7 and had numerous physical abnormalities. We had to undergo genetic testing to determine if it came from us or not on the recommendation of the doctor who performed her post mortem. The guilt and blame we both felt during the wait for the results to come back was horrendous. The unshakeable feeling that you did this to your child, that it's your fault is all consuming. We were fortunate, I don't like to use the word fortunate but I can't think of another one, that her condition was just 'one of those things' and unlikely to happen again. It must be soul destroying to be told it came from you and from that standpoint I can understand why they are fighting so hard. But that doesn't make any of this right. There comes a point where it's just cruel to carry on and that point in this case has been and gone in my opinion. They have to let go. For Charlie. He deserves better than this.

Except that's not true as has been discussed on various threads.

Im glad that GOSH and the Court (so far) have been sticking with Charlie's best interests. I've seen it before, from the sidelines, that in the face of determined parents and non-verbal/ very young children, that it can be extremely easy to forget that the parents interests and the child's interests aren't one and the same.

I expect most families with their own ill children will have been focused on them and hopefully not have been too involved with all this - however it has been constantly on the TV and radio news so hard to avoid.

Here's a summary of the Ashya King case from 2014: www.independent.co.uk/voices/comment/ashya-king-this-story-isnt-quite-what-it-seems-9716486.html

The USA CA is probably worse, definitely not better.

LovelyBath77 that's what I suspected

Thats not totally accurate neveradullmoment99. Southampton hospital never said ayesha king had no chance. they were offering the current gold standard treatment for his particular tumour. it needed to be commenced in a specified time frame to gain the best results. The parents wanted proton therapy because it had fewer chances of causing residual neurological damage, but had basically not routinely been used on Ayeshas particular tumour type before, His long term survival would be no different . The NHS do and has funded proton beam therapy when it was shown to have an increased benefit and in this childs case it did not have an increased benefit over conventional therapy and to a degree the long term results would be unknown. The parents where delaying the commencement of standard radiotherapy.
Time was of the essence .
The NHS will not justify paying for a treatment with no increased benefit just on parental whims, they have a duty with public funds.

Just read the Guardian key questions article. In it they say Connie has said Charlie enjoys watching videos with his parents. I can't understand this. Previously Charlie has been described as blind, deaf, unresponsive and unable to move his eyelids (the Guardian piece includes most of these but doesn't say he is blind - perhaps there is some doubt about the degree of his sight impairment?) How can this claim about him enjoying watching videos make sense? Surely there are some direct questions to be asked about that?

I wonder how many critically-ill children who required ICU care were turned away from GOSH during the last 6-9 months, because there were no ICU beds.....

Could it mean when he was able to? As he has got worse since birth? But surely a newborn can't watch videos..Odd. And if you read the GOSH info it says about eyesight there.

If he is able to enjoy watching videos why haven't they released footage of this happening? Every photo they publish just shows him unresponsive, sometimes arranged like him 'holding' his passport.

Lovely It's definitely present tense. I could understand the thing about tickling his feet because I could imagine he might be responsive to touch, even though it contradicts the 'unresponsive' description. But the watching videos claim just seems way beyond what is possible for Charlie. I can't understand how they can make it unless they are quite seriously detached from reality. I'm sure they are desperate for it to be true. But I don't see how it can be.

Talk is cheap and I think unfortunately Charlies parents have been given verbal support and therefore false hope from so many people at this point they are detached from the reality of what is happening. In the original judgement both agreed Charlies quality of life as he is now is so poor they wouldn't ask for treatment to continue if there was no hope of improvement. I think it's sad that as a result of a lot of people who can't actually help professing to help, they've fixated on that.
It's not a criticism of either parent I feel absolutely desperately sorry for them, they both look so fragile and I wish very much there was something that could be done. I wish people would think before speaking;show support, Yes, but I would say 99% of support so far given has been detrimental and given nothing more than false hope.

Some of the comments saying things like get their lawyers onto This, let's email them, someone email the parents, Connie and Chris need to do this, Jeremy Kyle, tell Trump to get his private jet are just something out of a soap opera and not even a little bit helpful to two parents and a terminally ill child who are very publicly in an extremely fragile position

Just seen a video from Good Morning Britain where an american reporter is describing GOSH as 'the hospital they hired to care for their son'. Em, no, sorry. We don't 'hire hospitals'

I feel so sorry for this little boy, I really hope he isn't in pain I understand that his parents are devastated but at this point I'm not sure they have Charlies best interests in mind.

I spent a week in GOSH with work last year and the staff there were amazing, they truly cared about their patients. I hate seeing all the hate the hospitals been given lately

Moreprosecco that's a disgusting thing to say, as I've said on another thread in response to similar comments, charlie is not "blocking a bed" he's a very sick child who is fully entitled to an nhs bed and the best of care regardless of how many other children may also require a bed. Bed numbers are not charlies problem, its the government's fault if NICU/PICU is under funded and under resourced and charlies parents were fully entitled to challenge GOSH through the legal system, as is right and just. A judgement has been handed down and still charlie is not "taking up a bed", and luckily bed numbers are not a consideration in the real world for deciding when charlie should be allowed to pass away.

If it was your child you wouldn't think your child should be taken off life support before the legal process was exhausted to make way for other children that also needed care.

That comment is as bad as the sort of comments you see on charlies army page.

its probably wishful thinking and projection Butterymuffin. If you are desperate enough you will see things that are patently untrue, a reflex twitch occuring at the same time you touch them is not a coincidence but evidence that the child is responsive. All other random twitches are ignored.

You would think the Guardian would have known better, hmm. Not sure.

ah sorry "Conne has said Charlie likes watching videos'- I see. Maybe she truly believes he does.

writerannabe - I would like to personally thank-you and all staff who work on nicu.

Thank you, although I'm not a NICU nurse, I just work on an acute ward for 0-2 years mainly but have a HDU unit for children of all ages. We see a lot of very ill children for all sorts of reasons, some terminal, and also have to ventilate children and we work closely with specialised hospitals and transfer children to them as needed.

One of our long term patients with a chromosomal abnormality had his life turned around when he was transferred to GOSH for pioneering new treatment which also involved surgeons coming over from the USA to participate. I do believe he was one of the first children in the world to have the treatment. He went from being a 1 year old with lots of limitations and a short life expectancy to effectively being saved. He's almost 13 now and is in mainstream school and is as 'normal' as his peers.

His case was in NO WAY similar to Charlie's (he could breathe on his own, was mobile, could see, could interact) and I'm not likening them in any way, I'm just making a point that GOSH have the ability to carry out amazing treatments when needed and so if they thought they could improve Charlie's life by getting him the treatment his parents want then I absolutely think they would try their hardest! They would not deny him treatment if they thought it could help and for the CA to suggest anything different and actually refer to the staff as murderers, well it's just abhorrent.

Just sharing a little of my story (helps posters a bit from a parents view). We had a 14 month old wonderful little girl who was ill for a few days (back and to from GPS, but back story too long...........). Eventually she was admitted to local hospital and after 5 hours had massive fit. When the consultant (eventually) got there, she was on life support. They just said that they have to send her to Alder Hey for tests (didn't tell us any more). She got to Alder Hey where we had to wait for 12 hours before we received any info. She was brain damaged but we would have to wait to see if there was anything they could do. She received one to one care from a highly specialised paediatric nurse. (I think we had 2 or 3 just consigned to us). These nurses don't just look after the patient, they look after the parents too. They fed and watered us, counselled us and became our friends. Amazing job they do. After a couple of days on life support (during this we made sure that one of us was with her 24/7) another consultant came to see our baby. He told us that there was hope and she might recover! Can you imagine our euphoria, there was HOPE!!!!!!

We carried on sitting by her while she received her daily treatment. One day the nurse said "would you like to hold her and cuddle her?" You have no idea how wonderful that was. (Later we realised that she knew there was no hope and so moving her wasn't going to make a difference). A few more days, I walked in and realised that she wasnt the same child anymore. My beautiful daughter had gone, there was a poorly child getting thinner by the day, but she really wasn't there anymore. I have no idea what the consultant was thinking of telling us that she could recover. We talked to the nurse, I believe that the doctors were just waiting for us to make the right decision, which we did and she died peacefully in our arms a few hours later.

I can totally understand what Charlies parents are going through, and the problem is that even doctors have different ideas and tell you different things. It must be horrendous for the parents at the moment and I would love to give them a hug and tell them my story. Communications with the staff must be at an all time low too. They need the nurse we had who counselled us throughout and I will always be grateful to her. (We went on to have another daughter 2 years later who gave us the will to carry on living!!)

I think we need to hear more stories of that kind in the news Writer. Unfortunately it seems to be bad news and drama which makes headlines though.

Sorry, wrong thread. Thank you for sharing your story, Callme