Charlie Gard

But the latest news I ve just heard ten minutes ago said the parents are insisting on their own specialist group of carers go with him to the hospice and a decision on that now has to be made I m really not understanding all these demands and I find it very difficult to understand how one little baby can take precidence over all the other sick and dying babies and children Whilst I truely feel for the parents I think it is so far from reality now that is wrong Why can't they do what most sad parent do and sit with their baby and hold him while he breaths his last in the hospital he is in and known for 11 months why move him when the only medical intervention will be removing the machines........ It's become a huge control issue now and not nice

I thought it was her.

Lorenzo's sister Cristina is a journalist and sometimes on Question Time etc.

The news just now said that the plan proposed is for him to be transferred to a hospice and for his feeding tube to be removed within hours, which would inevitably lead to his death fairly speedily. I hope that he will not be distressed by the move, or that they can make him comfortable for this. I cannot see what is to be gained by this move, except to meet the wishes of his parents for him to be out of hospital.

I understand that, in cases of serious illness, doctors tend not to treat family members because it makes it difficult to be objective. For similar reasons, families need to take the advice of a professional whose prognosis is not clouded by personal emotions.

Anniebach on some occasions parents may not be best placed to make the right decisions for their children. And we know some parents are just not good parents. In this case I think these parents wanted, desperately, what they thought was best. I feel that the doctors equally had the child's best interests at heart. They had far less emotional involvement as well as the medical expertise to make the assessment.

Yes, I realise that many do, but they could alleviate much of world poverty, over-population etc in one speech.

Jalima. many members of the Catholic church do positive work to support the poor, sick and disabled.

I saw a whole bunch of 'pro-lifers' in town the other day waving banners. Whilst I accept their right to hold their opinions they may have been better placed doing something practical to raise funds to help impoverished families, offering help at the local children's hospice or volunteering to provide respite care for families with a severely disabled family member.

Decisions by parents is for them , their children and no one else. It's over now, the little one will be dead soon.

Penstemmon How many babies have been born into a life of hopelessness, disability etc because of the teachings of the Catholic Church?

A friend said to me today that they, Charlie's parents " were milking it for all it was worth". I was quite shocked by that as I believe his parents are doing what they think best. However it was interesting to hear such a blunt point of view. Shared I am sure by others.

How very sad that Lorenzos parents couldn't let him go. That was no life he had. Same with Charlie. Hope other parents don't follow suit. The medical team have done everything within their power to help Charie as they have, the devotion they show all their patients is commendable.

That is a very thoughtful, and thought provoking, post Penstemmom.

It is the sad reality that many sick babies die everyday. In many places a simple vaccine would save them, or easier access to proven medicines could ease pain and suffering or even cure. In some places the ruling government prevent children accessing treatment. Where are the pro-life campaigners then??
This one little boy, with an incurable condition, has dominated the press / media and got the attention of Trump/ Pope. I am sad that the media is only interested in the controversial nature of this case. His understandably distraught parents have focused their grief on the hopeless fight for treatment and I can understand that... but many other parents, who love/loved their incurable babies/children just as much have taken a different path. Other babies /children will have sadly died , despite the best care at GOSH, during the time this case has been in the headlines and their parents will be grieving too.

So the parents want longer with their child and I can understand that but it really isn't about the parents - it is about a little child.

In his statement I believe Charlie's father said they had accepted he wouldn't make his first birthday next week, so I'm confused why they want extra time, (another week?). Sadly the inevitable has to happen, I just wish it could be done without all the bitterness and arguing.

Yes, I remember the film very well. It was terribly distressing, so much so that my husband said he couldn't watch it any more - though I watched to the end.

Lorenzo lived to the age of 30. I suppose we will never know if there was any quality to his life, but it doesn't sound great. The New York Times reported, on the death of Lorenzo's father in 2013:

"From about the age of 8, Lorenzo was paralyzed and blind, unable to speak, dependent on a feeding tube and kept alive by round-the-clock nursing care and the nearly full-time ministrations of his parents. They talked to him constantly and insisted that visitors do likewise, though no one could be certain about his level of awareness. His parents believed that Lorenzo recognized their voices, loved music and enjoyed being alive.

"Mr. Odone conceded, mainly in interviews he gave after his wife died in 2000, that he had sometimes wondered if that was enough of a life to justify the extraordinary lengths to which he and his wife had gone."

Just wondered if anyone has seen the film Lorenzo's Oil. This case has brought it to mind.

I think the request to take him home was unrealisitic. I realise that this does happen a lot but it concerns me that people may request the same in circumstances where it is not possible.Much as this tragedy has taken it's toll on them, I also feel the news media has sucked the life blood out of them.

Did these parents request unrealistic things from the NHS Tegan ?

They clung to hope Jalima. Any crumb of hope must have felt like a lifeline when they found themselves in an unimaginable situation. As others have said, I don't think they would have been able to think rationally or logically. And I suppose one day there may well be a breakthrough in treatment for this condition; who's to say this might not have been it? Unlikely I agree, but wouldn't we all want our child to be the one who was the first to benefit? I can't see that they have done or are doing anything wrong.

Sadly I think their story has run its course in media terms now. People are ready for the next story, hence the growing impatience with these patents. But this is their lives.

Yes I agree Tegan the interference from Trump and the Pope was unbelievable as well .That's to say nothing of the rest of the media circus. Can't help but feel these poor parents have been victims too.

This drug is experimental and unproven so, even if administered earlier there is no reason to suppose this would have 'cured' Charlie, sadly.

Isn't there going to be a problem in the future with other families with sick babies requesting unrealistic things that the NHS can't possibly afford? The fact is, this couple have a terminally ill child, who is quite possibly in pain, and they can't let go as a result of being led to believe the child could be cured by a doctor from America who didn't even come over to see him till quite recently and has a financial interest in the treatment offered? I do feel desperately sorry for the parents, but probably not in the same way or for the same reasons that a lot of people do.

AB, there is nothing wrong with that desire if the medical experts felt it would not cause the child distress or pain. As I read the situation, admittedly from news bulletins and papers, both medical staff and the judge believe Charlie is more likely to suffer if his life is prolonged. I think the judge is concerned that the private doctor does not have the expertise for this particular situation/condition, experienced though he may be. The parents are seeking a specialist paediatrician but as I said in a previous post they are very thin on the ground. I note several of the staff who have nursed him are willing to give of their free time to help the parents through this. I believe the parents should be left to make their decision and allowed to say 'goodbye' to their child without the constant media attention.