Charlie Gard. Should the parents just let him go?

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  • Having had to deal with the daily effects of Parkinson's and dementia on my poor dad, I cannot imagine what this baby is going through.

    Most of my time dealing with my dad for the three years up to August 2016, was concerned with my Dad's throat. Can he breath? Yes, because I made sure of that. Can he eat? Yes, because I made sure of that too. But it was very, very hard.

    The effects of muscle weakness on the body are devastating and there are quite a few diseases like Parkinson's and Charlie's which cause muscle weakening.

    I only knew the true effects of muscle damage on the last day of my Dad's life when I saw a chest xray of the pneumonia that was about (didn't know at the time) to kill him. As the doctor put it, forget the pneumonia, even if he (my dad) gets better, his lungs have been destroyed by Parkinson's. They never showed me the results of earlier tests they did which showed the damage of muscle weakening. I got the message, eventually...

    Someone needs to slap these parents. Sorry, but it has to be said. Nothing can change what it is.

    I can't express adequately the respect I have for you in your care for your dying father. It must have created experiences in your mind that are life changing and will be with you forever, not just about the sick, the vulnerable and the dying, but about other things in the world. I'm sure you have a lot of advice and understanding for others in this situation.

    I saw on the news this morning that the new scan for Charlie is not good news. The parents have had another fit of rage. I hope the judge can bring this to an end soon as fighting like this over a child who has no hope is becoming reprehensible. And GOSH shouldn't have to be slapped all the time when it has some of the world's best doctors dealing with Charlie's condition as well as just plain having some of the world's best doctors and staff. I find the whole thing sad and contemptible. It has been turned into an hysterical show of social networking boosted venom.

  • It turned out exactly as you predicted. I've not seen the news yet, but unless the doctors can reverse brain damage (we'd become gods if we could do that) the outcome is inevitable.

    Thanks for your words about my Dad. I'm still on "that clock" now, which is why I'm on the forum now and have been up all night - again. But, it is also why I'm losing patience with Charlie's parents. Like them, I did everything I could to keep my dad alive, but there comes a point when that is no longer possible. In my dad's case, I always said to my other family members that when he could no longer eat, that would be it for him. He stopped eating on the 16th August 2016 and died two days later.

    Charlie's parents must except what is going to happen.

    I wonder if other such situations will arise as young parents are egged on by social media, rather than using their own brains? Although, having been in a life, then, death situation with my dad, normal thinking tends to get chucked out of the window.

  • We have had to euthanize a number of animal companions over the years. You become accustomed to watching for the signs when, as you mentioned above, they can no longer eat, or their bowels and bladders stop working due to a number of illnesses that are not going to go away.

    There comes a time when you know you must take the choice to send them on. To stop their suffering. You don't lose hope, as hope arises in the early stages of illness when you think various things may help, but as the diseases and conditions progress, you become naturally aware that the individual is going to die soon and when they begin to suffer beyond the capability of drugs to make them comfortable and when vital processes start failing, you release them. "If you love something, let it go ..." as the saying goes, and we are now quite familiar with the day that dawns when it's time to let them go.

    I would do the same for a human. In my worldview, there is no difference. Mr Wing has asked me that if it is ever at all possible that he ends up in one of these situations, would I please pull the plug on him. He dreads an existence hooked up to a machine. I would ask the same for myself. I would do the same for anyone who asked me or for anyone who could no longer ask. It's a tough decision but if we can invent machines to sustain life then we must realise that without these the individual would die. Without the organs Nature provides for the same functions, the individual will die. So be it and so it is.

    Brain damage is the worst outcome. Without your brain, your mind cannot grow and you are in a kind of suspended animation as a living being, unable to experience the world or communicate the way others do. Where is the purpose in such a situation?

  • You become accustomed to watching for the signs when, as you mentioned above, they can no longer eat, or their bowels and bladders stop working due to a number of illnesses that are not going to go away.

    I spent three years off my life dealing with the outcome of a problem bowel and bladder. It is not pretty. It was far worse for my dad.

    I could have left him to die, I was told to leave him in the doctor's care. I saw what their care involved. Never. He lived for another three years, but a very hard three years, but as I told you before, there were laughs along the way.

    Charlie will never laugh or cry. Why can't his parents let him go?

  • I dislike the way Charlie's parents behave. They lack consideration for the huge financial cost all this is incurring. They bandy terms like "evil" about and accuse people of lying far too glibly.

    If Charlie's scan supports the GOSH doctors' verdict, is America still going to grant the parents permanent residence.8)

  • They must let this little baby pass away , he will never wake up , is blind, deaf and in a vegetative state , let the little love go .

    They won't, though. They just can't let go.

    I wonder if they might try and sneak him out of the country to get to America? I would have thought it to be impossible, but it is such a circus now, anything goes.

    (BTW, nice to see you back Nigel.:thumbup:)

  • I dislike the way Charlie's parents behave. They lack consideration for the huge financial cost all this is incurring. They bandy terms like "evil" about and accuse people of lying far too glibly.

    If Charlie's scan supports the GOSH doctors' verdict, is America still going to grant the parents permanent residence.8)

    On the residency, I think it was granted to them.

    I don't really blame them LW, despite my earlier comments. They're just not thinking straight. Their in "fight or flight" mode, at the moment, they're still fighting.

  • It's a dreadful scenario. I think the recent scan is going to seal the deal, though, but it was mentioned too soon by a lawyer, so there is a huge performance about that and she will no doubt get dumped on for it. She has my sympathy in advance. What is really important is what the scan reveals. The American doctor can surely not acknowledge any hope if Charlie has brain damage.

  • If they go, I suspect they might stay there.

    The yank doctors will make a load of money out of the poor baby. I'm quite convinced they can probably keep him alive for years, knowing how much money Charlie's parents have raised through charity donations.

    I cant help thinking along similar lines.......

    Its awful for the Parents & I really feel for them , but they must face it, the hardest thing they will ever have to face.

  • The parents of terminally ill baby Charlie Gard have ended their legal challenge to take him to the US for experimental treatment.

    A lawyer representing Chris Gard and Connie Yates told the High Court "time had run out" for the baby.

    Parents end law case

    ====

    The American doctor has backtracked... He actually did that a few weeks ago while still in the States, but now that he's seen the brain scan, he's said there is nothing he can do for Charlie.

    I always thought up to now that things like social media was something that had no impact. You can switch it on and switch it off, but because of the wider attention this case garnered, the parents were led down a road which they should have not been led down.

    I feel sorry for Charlie, but he'll be in a better place in the next few days, but I feel as sorry for the parents too. Being given false hope is awful, especially when you believe it above all else.

  • Already there are accusations that the doctors from GOSH "let Charlie waste away and die". Already there is blame laid at the door of GOSH with claims that if they had allowed him to be treated earlier, he would have been all right.

    This is disgraceful. His condition is why he is deteriorating and no one is to blame. In fact GOSH has kept him alive or he would already be long dead.

    The sooner it's over the sooner the circus and all its clowns can go home. It won't be long before they pick on another hapless victim. It's what they do. And the media will be there to fuel their fires and sow confusion and doubt.

  • I'm glad for the kid that this is over. The parents were clearly led by their emotions, tied up in unwarranted feelings of guilt, and 'what if' questions. But they lost my sympathy some time ago, with their continuing outbursts at lawyers an doctors. In this they were encouraged by the religious and political right wing, taking advantage of the situation to put forward an anti scientific, anti abortion agenda. This also goes to the Trump/Pence intervention, angling for votes from the Tea Party, and attacking the NHS in their campaign against Obama Care. Social media trolls and the extreme religious lobby might now even end the chance of Charlie going home to die, given the odds on a howling mob gathering to disrupt and abuse the medical professionals involved in palliative care. The truth is, Charlie Gard was always going to die, he wild already be dead but for the efforts of GOSH and the interference of lobbyists and doctors with $ signs in their eyes has only gone to prolong his suffering.

  • I agree PM.

    As I said, I have since backtracked on my criticism of the parents. They're young and in such a terrible situation, but unlike earlier generations, you now get people like the American president and the Pope intervening on what would have been a very private matter.

    Welcome to the 21st century. It started with a bang (9/11) and its certainly interesting times we live in.

    And as you mention Pence, I am hoping Trump falls out with him eventually. As Trump seems to fall out with everyone. Pence is a "particularly" unpleasant character. Spit. (need to get a smilie for that!)

  • The parents of terminally-ill baby Charlie Gard have returned to court to seek permission to take their son home to die.

    Lawyers for Chris Gard and Connie Yates told the High Court they wanted "a few days of tranquillity outside the hospital before Charlie passes away".

    They accused Great Ormond Street Hospital (GOSH) of putting "obstacles" in the way of Charlie's return home.

    But the hospital said Charlie's parents had refused an offer of mediation.

    Back to court

    ====

    Oh dear, just when we thought this was over, not quite...

    There must be better ways of dealing with those that are going to die without resorting to court cases.

    Having been in this situation myself with my Dad, I have every sympathy for the parents. The last thing I wanted was for my dad to die in hospital. I did everything over a 12 year period to keep him out of hospital, but that's where he ended up. That said, unlike the hospital, I don't posses things like chest x-ray machines.

  • At this rate poor Charlie, who doesn't know where he is, has become the subject of a fight the parents are constructing and prolonging between themselves and GOSH. If they keep it up, Nature is going to solve the problem by taking Charlie before the parents have finished scrapping about where they want him to die.

  • Terminally-ill Charlie Gard will be moved to a hospice and have his life support withdrawn soon after, a High Court judge has decided.

    Great Ormond Street Hospital (GOSH) said it was not in his best interests to spend a long time in a hospice.

    His parents wanted a private team to care for Charlie so they could have more time with him. "GOSH have denied us our final wish," his mother said.

    The judge approved a plan that will see Charlie die shortly after being moved.

    Judge orders hospice move

    ====

    Don't really know what I think about this.

    The parents have said they want some time with their son away from the media, courts etc, but they are the ones that seeked the media, court attention to begin with.

    If this was their adult son whom they had cared for many years, as many parents do with severely disabled children, I think I could empathise a little more with them.

    I'm a bit like a swinging pendulum here over the parents, but as per my original post, they should just let him go. Well, in fact, that choice, which was their's originally, has been removed from them now.

    There is a separate question here to do with withdraw of life support and I will create a separate thread about that in the future, but even the yank doctor said there is no hope for any recovery what so ever for the parents and now, by court order, the parents have to accept that.

  • Personally I think the whole affair has been an utter disgrace. People have been using the situation for their own ends, and have had no consideration for the family involved. From Campaigners using it to further their own causes to Donald Trump using it to score political points., a lot of people need to take a long hard look at themselves.

  • no one will care, or remember the babies name in 4 months time.

    Except the parents.

    Thats the truth of it Im afraid.

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