The Charlie Gard Case

[Jambalaya]

Yeah, I know, tyty. The doctor offered hope before he'd seen any of Charlie's scans or records, and the parents took that hope and ran like the wind with it. As any parent would. Now they don't seem to be able to let go of that hope - again, understandable. Sooner or later, though, they're going to have to come to terms with things, even if Charlie does get the treatment. In the court documents it said that frequent seizures with this condition indicate death is only six to nine months away, even with life support, and the seizures have been going on for a while.

Treatment or no treatment, Charlie is probably not going to have a long life, and at some point his parents are going to have to face the unthinkable. Some people never recover from child tragedies, and this couple seem dangerously on the edge - giving up all work, living at the hospital, spending 17 hours a day by his side, unable to accept medical opinion - they haven't set foot inside their own home for eight months. I just don't know what's going to happen to them when Charlie eventually passes away. They seem completely broken already. It's heart-rending.

I wonder how that poor little baby is doing this weekend. You can only hope that he is not in pain or suffering.

 

[Austina]

Following the recent review from the Doctor offering the experimental treatment, the parents have now agreed to let Charlie go.

No doubt they will blame GOSH for delaying things, but they have always been convinced that no treatment would make any difference, and Charlie was suffering.

http://www.bbc.co.uk/news/uk-england-40708343

 

[pregcurious]

I feel so sad for the parents. There are no winners here.

 

[chemgirl]

ETA: Apparently the experimental treatment is an oral medication, so why can't that medicine be brought to the UK since Charlie can't be moved? It's not as if the treatment is a complicated surgery using machines and techniques only found in the States, for example.

There is the argument about his suffering, but flying the meds over with a doctor and administering it wouldn't take long, surely. (The only thing is, I'm not sure if it takes a long time to work, or if it's a long course of treatment.)

If the parents don't get the chance to do the experimental medicine, I'd be very concerned about them going forward. Not being able to try might just break them forever.

But on the other hand, the baby's welfare should come first and if the new treatment isn't quick, he could be in for weeks or months more of suffering to wait and see if it has any effect.

Talk about a dilemma. Charlie's medical team must be beside themselves with stress and sorrow, given that they know Charlie well now and given the global pressure.

Still not through the thread so not sure if this has been addressed. Apparently the doctor from the US was in the UK late last week so maybe they are looking at this as an option.

I sincerely hope it doesn't happen.

The hospital was willing to consider the experimental treatment before there were test results that made it clear there would be no quality of life either way. Apparently the treatment can't reverse the brain damage that has already occurred. So Charlie might gain a bit of movement. How is that going to stop his stuffering? He's never going to have any quality of life treatment or not. The problem is the treatment might keep him alive much longer. It's cruel.

That said it's fair that the parents want to try anything and everything. In this case they are clinging to false hope. The medical staff know it, the courts know it, but the parents aren't willing to believe it. If there is any further treatment, it's for the parents and definitely not for Charlie.

 

[Austina]

The US doctor had not reviewed the baby's note, studied scans or even spoken to the Drs at GOSH, his intervention just gave false hope. He also admitted he had a financial stake in the drug. His treatment had not been tried on anyone with such severe brain damage due to the condition.

The parents are now wanting to take Charlie home to die, and a ruling will be made this afternoon about transferring him to a hospice, which it is felt will be in his best interests. The parents live in a small apartment, accessed via stairs and it is believed that on a practical level, it would be impossible to get the necessary equipment in there. He would have to come off the ventilator and be bagged, which medical experts believe would cause unnecessary stress and suffering.

Whatever the rights and wrongs, it's now time for the parents to accept the inevitable, and allow their baby to die in peace.

 

[whitewave]

As long as his financial interest is disclosed, there is no issue. Most academic researchers have financial interests in the drugs they are developing. It is similar to surgery center doctors disclosing that they are shareholders before they do surgery on you at their center.

 

[Austina]

I think the bigger issue here is that he gave the parents false hope. He hadn't even spoken to the Drs who've taken care of Charlie 24/7, so allowing then to believe he had a 'cure', was, IMVHO entirely wrong.

 

[Jambalaya]

I feel so sorry for the parents. They must feel as if their world is ending. The world-class hospital did tell them nine months ago that there was no hope. I do hope Charlie didn't suffer for the last nine months. Unfortunately, the expert doctors testified that he probably is, and "not at an insignificant level".

I see that they fought the hospital for the right to take him home, then conceded, and now they are fighting the hospital a third time about the end-of-life care plan. The judge has said he will give them until Thursday at 1pm to work it out with the hospital, or he will make a ruling.

I think the saddest thing here is that the parents will believe, for the rest of their lives, that their son could have been saved if the hospital had given the treatment earlier. A team of medical experts and all court evidence vehemently deny that this is the case. Apparently all the stages of legal proceedings were forensically meticulous. They say that Charlie's strain of mitochondrial disease is severe, and there is no treatment that's even been tested on mice, and that the treatment would have been hopeless and induced further suffering.

Children's hospitals are full of parents who have to make the same decisions, and if a case is hopeless, most of them accept it and don't want their child to suffer. I understand the Gards' desperation not to lose their son, but I fear that they have destroyed themselves with their inability to accept the monstrous stroke of bad luck that befell them.

If you truly believe that the hospital effectively killed your child, how on earth do you ever get over that and move on with your life? I fear that they will never be able to move on and create a happy family. The mother said that Charlie had the potential to be normal, but according to the medics his illness was catastrophic, affecting every cell in his body and there is no cure. His parents are not able to accept this, and they will live the rest of their lives thinking that something could have been done for Charlie, instead of accepting that no one could have done anything and that the medics loved him and did everything they could. They even let the parents live permanently at the hospital for all those months, and a source in court said that the hospital has moved heaven and earth for Charlie.

But all the parents see is that the doctors kept him from lifesaving treatment that could have made him normal. I do not see how they can ever get over that.

 

[whitewave]

It's over. He died today.

 

[Austina]

This is a really interesting article about the whole situation. I'm glad the poor little chap isn't suffering anymore. RIP Charlie.

http://www.melaniephillips.com/cruel-ignorant-campaign/

 

[Jambalaya]

Very sad. His parents must be devastated.

I do hope he didn't suffer too much during the eight months that the parents and doctors disagreed.

 

[whitewave]

My very best friend is a palliative care doctor and we talk about cases like this all the time (Jahi, anyone.... also little boy in Facebook "prayers for Preston" near drowning).

We both, very obviously, feel we would let our kids go knowing plainly the situation (my husband is a doc-- we have been together since HS) and how it would end..... but lately we have started wondering-- maybe, just maybe, we would go a little crazy and embrace denial?

I think we would each slap each other and knock sense back in though.... it is hard to say when it is your child what you would do...

Anyway, I'm just talking. I have great empathy for families like this.... heartbreaking

 

[Jambalaya]

Whitewave, I agree with you completely. Part of me felt impatient with Charlie's parents because a world-class medical team had told them many months ago that not only was there no hope, but that it was very likely Charlie was suffering "at a not insignificant level."

I, too, would love to believe that had it been me, I'd have had the courage to do what was best for a catastrophically sick child and release him from his misery right then.

But I also wondered if I would go a little crazy and embrace denial.

It's lucky for their relationship that they were on the same page. Imagine if one parent believes there is no hope and the other believes he could be normal with treatment.

All in all, though, I fear that little Charlie did suffer a lot during those long months, as the article linked above mentions, and it's a pity that his parents were not able to accept the situation. I suppose they'll have to, now. I can't imagine how they're feeling today.