yellowroom

it must take a special breed of medic to be able to cope with the stresses of a paediatric ICU, and doubly so at GOSH with all the attention, protests and media hoopla going on at the moment.

But in this case, the medics disagree with what is "the best" for Charlie and that is why it has gone to the courts. Under English law, the child's rights are paramount, and can and do over-rule the parents wishes. In the UK, parents have responsibilities, not rights, and children are not chattels of their parents. I think US law may differ on that fundamental point and may account for some of the more outrageous statements coming from your side of the atlantic about the state murdering children.

Pollyana

How many children's nurses do you know well?
Yes they move on to the next patient, being tough and resiliant is part of the job, they couldn't do it otherwise, but part of what makes them so good at their roles is the fact that they still have a level of empathy for the patients and their families. No-one can nurse a sick baby for 9 months without some kind of emotion, however hard-hearted they appear.

Pollyana

I think part of the issue with the family is that they have to be seen to support Connie and Chris, whatever their personal thoughts on the case.
The media frenzy that has led to the facebook army and all the rest of the circus is doing no-one any good, is it, as so few of them have even read the basics of the case - thats obvious from some of the comments. I've pointed a few people to that same GOSH link, it's an excellent view of the situation.

Pollyana

It certainly does. They are exceptional.

Twinkle0927

This, this this!!! My thoughts exactly. I don't like all this "save Charlie's life" and "if he's still fighting then we are still fighting". His life cannot be saved. He's not fighting, he's being kept alive artificially. Social media users and armchair experts seem to be under the impression that there is a magic cure for him but GOSH are refusing to provide it. Not so. The reason GOSH have not cured him is because there is no cure. It's very sad to see the parents unable to accept this. I note that they like to use a photo of him as a much younger baby (in the star babygro, monkey under his arm) in the early stages of the disease where he looks very well except for the tube in this mouth. He currently looks nothing like that. He looks lifeless. I just wonder what it will take for the parents to realize there is nothing that can be done. It's almost like they are lying to themselves. It is very distressing to be told there is no hope for your child. I was told this whilst pregnant in 2004 and I still remember that feeling of "it can't be true. They must have made a mistake with the tests" and so on. They were right.

morpeth

My mother,three aunts,two cousins

Pollyana

Well if they no longer have any feelings for their pateients, I feel sorry for both nurses and patients.

All those to whom I am close still have enough feelings to show and feel empathy when dealing with sick babies and children, and their relatives, while also being tough enough to deal with the realities of the job. Not easy, and I take my hats off to them, but I have to say those who retain the ability to feel some emotions for their charges are the best around - and that includes those in Paeds and Neonates at GOSH.

Pollyana

Spot on. The social media 'experts' are probably doing far more harm than they realise by constantly shouting about how he can be saved, when he can't. Connie and Chris need to hear and accept the reality, not the impossible dream.

Nutmegger

I'm finding it very demeaning that people -- Trump and Pence for instance -- are implying that GOSH hasn't done everything possible to help this child. But they would never think to do any research into the hospital's reputation and would probably never admit that a hospital outside the US is the best in its field. My cousin's daughter has lived a full life, including giving birth, after spending large chunks of her childhood in GOSH as a result of having been born with her "waterworks" either missing or misplaced. All our family now ask that any "in honor of" donations or bequests go to GOSH as a result of the miracles they performed.

morpeth

Actually I cant see the Atlantic at all just the North Sea.

I would think any bureaucrat in US or UK would generally be of the general mindset the state knows best if we look at the last decades. And certainly there are those in both countries perfectly fine with the state determining what is best.

I really don't know enough about this rare disease to know what is best, but if there is even the remotest chance of a miracle and it was my child, I wouldn't be fine with some judge or doctor stopping that possibility. Yes parents have responsibility but to meet that responsibility best the state should bend over backwards to support the parents in exercising that responsibility.

kimilseung

I dont think either of you are wrong here, people can still have emotions but also accept the cycle of life and death, I think the medical community by being close to death so much are sometimes more accepting of it than those not. That doesn't mean they are without feeling or that it doesnt stress them out sometimes.

Pollyana

Very well put. Having feelings and emotions for their patients doesn't stop them accepting the reality of the situation.

Twinkle0927

They say Connie has researched the condition extensively (this was the reason given for her being allowed to attend the meeting between GOSH specialists and the New York doctor earlier this week). I'm sure she has spent every waking minute looking for information about the condition. I would too if I had a child with a complex medical issue. But she can't possibly know what the doctors know. And if she does, she would know that there is no hope. I stumbled across the Facebook page and there is repeated reference to a child (in the USA, I believe) who has this condition and was in the ICU but is now riding a bicycle. One child. Clearly that child did not suffer the same extent of brain damage that Charlie has. But what happened to the others? I know it's an extremely rare condition but I did read something like 15 other children have been diagnosed. Are they riding bicycles?

Pollyana

I've not come across any info on the others, but the one child who has been mentioned and has been treated with this experimental drug was apparently nowhere near as sick as Charlie.
Charlie has irreversible brain damage, is blind and deaf and cannot move or breathe alone - GOSH say none of those effects of the condition can be reversed. S even if he was treated with this 'miracle' drug he would never have a good quality of life because his condition s so much more advanced than it was with the other child, before the treatment has even started.

yellowroom

Don't forget, the patient is the child, not the parents. Doctor's are not obligated to try for a miracle just to make the parent feel better and that "we've tried our best". This is all heading into medical ethics territory - legally doctors can't just give any old treatment, cross their fingers and see what happens, particularly if the patient is not in a position to give informed consent and there is no available data on patients with the same condition. The hospital has to apply to their Ethics Committee to run it past them first - after all there could be terrible side effects that makes things worse not better. And GOSH was actually applying to do that when Charlie suffered severe seizures and brain damage. At that stage the doctors decided that the small chance became no chance of improvement, and decided not to go ahead. It seems that is the point at which relations broke down between the hospital and the parents.