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Charlie Gard

(741 Posts)
devongirl Sun 09-Jul-17 18:18:35

My heart absolutely bleeds for his parents, but I can't help thinking it's time to let him die in peace..

Ana Sun 09-Jul-17 18:22:51

Oh, I so agree. Poor little boy would never have any quality of life, barring a miracle...

Daddima Sun 09-Jul-17 18:26:08

I'd agree with you, devongirl, but I don't know how I'd feel it was one of my own. Before I had children, I used to think that organ transplants weren't right, but when I had my children my opinion changed!

devongirl Sun 09-Jul-17 18:29:02

It would be very difficult, I agree, but I'd be haunted by the idea that although he's not responsive he might be in pain, and I was prolonging it for what would, I fear, be my own benefit..

BBbevan Sun 09-Jul-17 18:32:57

His Mum said in an interview that he could be a normal little boy. A doctor said she was deluded. But you would want to believe the best against all odds.Wouldn't you. You would do anything for your children and Charlie's parents are doing what they feel they ought.

GillT57 Sun 09-Jul-17 18:50:19

Obviously we all feel for the parents, but it is turning into a circus with American pastors flying over to pray for him (thought prayer travelled) and Trump and even the Pope interfering. It must be distressing for staff at GOSH who are being called murderers and other such vile accusations by the so called 'Charlie's Army" who are supporting Charlie's parents.

annsixty Sun 09-Jul-17 18:56:17

A very practical point but his parents seem to have devoted their lives to be with him all the time
Are they prepared to do this for the rest of his and their lives

I am assuming that life support can keep him in the state he now indefinitely
That gives them no hope of normal family life with siblings for Charlie, not to replace him but give them the family they long for.

merlotgran Sun 09-Jul-17 19:32:50

It's terribly sad and I can't imagine the agony his parents must be in but I too feel sorry for the dedicated and caring staff at GOSH.

The demonstration last week outside Buckingham Palace with people wearing, Je suis Charlie Gard wristbands made me despair.

I don't see how that can be called worthwhile support. sad

devongirl Sun 09-Jul-17 19:38:09

I feel it's turning into a bit of a circus now, and no longer about the best interests of the baby.

Charleygirl Sun 09-Jul-17 19:39:58

The sheer cost alone of keeping him in ITU must be over £1000 a day. I agree with the doctor, the mother is deluded if she thinks that she will have a normal little boy after miracle treatment in America or wherever. I think it is wrong that Trump and the pope interfered. Let the little fellow die in peace, pain free and with dignity. Should I duck behind the sofa?

Jalima1108 Sun 09-Jul-17 19:42:07

I think I would want to try anything if there was a possibility his condition could improve or even just be stabilised.
I would be hoping for a cure in the future - who knows now that there are so many advances in molecular medicine.

whitewave Sun 09-Jul-17 19:43:22

The Doctors can't be 100% that he isn't in pain, a natural death would have been so kind and dignified for the little chap.

As a parent you can never own your child or its life, you are simply guardians.

Jalima1108 Sun 09-Jul-17 19:47:52

The doctors can't be sure that he is in pain though.

Perhaps he has just been born a bit too early to benefit from the breakthroughs that are being made in mitochondrial disease.


Imperfect27 Sun 09-Jul-17 19:48:22

Such an awful and awfully sad situation and I cannot imagine how I would react as the parent. From the outside looking in, I feel he should be allowed to slip away - he. My understanding is that he isn't fighting for his life, but is only being kept alive by machinery and there does not seem to be any real hope of improvement. The parents do not seem able to heed medical advice because of their very understandable distress and the whole situation is now becoming exploited by politicians and religious zealots. I am a person of faith, I have also lost a child - my heart goes out to the mum and dad, but I truly hope they can be helped to let go and receive the support they need to grieve.

Tegan2 Sun 09-Jul-17 19:49:17

I did read an article that said that, had treatment being offered earlier [before he had seizures] his prognosis would have been much better. It sounds like quite a complicated, rare case. I keep thinking, though, of the family that 'kidnapped' their child from a hospital couple of years ago and took him for treatment abroad when there appeared to be no hope for him here. Does anyone know what happened? I believe the treatment was successful. None of us know how we will react in certain circumstances, do we? However, I do feel that, in Charlies case it seems wrong to prolong any pain that he may be in. Terribly sad case, though.

nightowl Sun 09-Jul-17 20:36:40

That was Ashya King Tegan and apparently he is well and back at school. I was so angry about the treatment of his parents at the time and they have been proved right. I know little Charlie's case seems even more extreme but I can't help thinking he should be given one last chance, if only for his parents' sake. No one would want to prolong his suffering but is there any evidence he is in pain? It's so difficult to know what might be for the best.

rosesarered Sun 09-Jul-17 20:39:56

Imperfect.. good post, and I agree.

NfkDumpling Sun 09-Jul-17 20:49:47

I understood that he is already irreversibly badly brain damaged beyond having any meaningful quality of life. Also that this new American treatment hasn't even been trial led on mice yet so he's the experiment. I don't like it.

NfkDumpling Sun 09-Jul-17 20:51:33

Mr iPad doesn't like trialled. Or trialed.

devongirl Sun 09-Jul-17 20:52:08

What concerns me nightowl is that there always seems to be 'one last chance'; even when the highest courts say no, the pope, Trump, the Italians and so on intervene. I've seen no suggestion that there is really a chance that he'll ever be able to lead a normal life?

Day6 Sun 09-Jul-17 20:56:18

I feel so sorry for his parents. What a dreadful thing to give birth to a child so sick, so disabled.

I really feel that they have exploited social media however. This story is typical of the times in which we live when everything going on has to be for public consumption.

Many many parents have had sick children that they've had to let go. Many parents have lost children to illness or their child's inability to thrive. It happens and it must be heart-breaking. It's been awful for them.

Charlie's parents have chosen to broadcast their angst. They want to believe he can have a life even though it seems there is no hope. Why would you turn your child into a science experiment?

I fully understand the adage of here there is life there is hope but baby Charlie doesn't have a life...he is profoundly disabled and he may be suffering, poor little mite. Medical advice is that his suffering should end.

Stop the media circus. It's so distasteful imo. Charlie is loved and will be loved, forever more by his parents. He ought to be given peace. His parents have to stop this.

A few years ago he'd have slipped away quietly with few people knowing about it. Now he's become a cause. I find it all so sad.

Whilst I understand his parents clinging to any scrap of hope I feel their concern now should be the child who really shouldn't have lived this long. Nature is cruel and sometimes our young aren't meant to live. Acceptance must be hard but true love means putting the needs of others above our own.

NfkDumpling Sun 09-Jul-17 20:58:21

Exactly Day6.

Jalima1108 Sun 09-Jul-17 21:00:11

I think the treatment has been trialled on another child but one who did not have the exact syndrome as Charlie.

Perhaps it would be best to let him go peacefully and to hope that research, which is really in its infancy, will advance and enable his parents and others to produce a healthy child in the future.

I don't know what I would do under the circumstances.

Ana Sun 09-Jul-17 21:00:39

Yes, I agree Day6.

paddyann Sun 09-Jul-17 21:16:16

the parents have to be allowed to take the treatment as far as possible,if they dont they will think they failed him and they'll live with guilt the rest of their lives.The decision has to be theirs,no one else can make it for them.The need someone to sit down wth them and be realistic about the American offer,lets face it it appears American doctors are happy to take vast sums of money off people and give treatments/drugs they shouldn't in return.think stars like Michael Jackson,he should never have got the medication he was given ,but because he was paying ,he got it.My heart goes out to this couple but I believe that they need to take a step back and then decide.Whatever their decision they must make it the last and whatever the outcome I wish them peace when it comes