Charlie Gard

Now there'ss apparently a problem with Charlie's parents taking him home to die - the hospital says his ventilator won't fit through the door...

The GOSH statement to the court on 24th July said

"Professor Hirano (“the Professor”), whose laboratory research has an international reputation, is very well known to the experts at GOSH and he communicated with them about NBT treatment for Charlie at the very end of December. In January, GOSH invited the Professor to come and see Charlie. That invitation remained open at all times but was not taken up until 18 July after being extended, once again, this time by the Court."

I would hope in light of this that the parents will not pursue the idea that GOSH left the possibility of treatment too late.

My worry in this whole sorry situation is that the family may be encouraged to take GOSH to court. Which will drag on and on. I can't believe they didn't do everything they could for poor little Charlie .

Some will still find a reason to protest that he died because they think GOSH didn't do the 'right' thing. It's not all going to to away just like that.

Once the baby is dead there will be no reason for those protesting to save his life

I feel for these young parents; as I have said before they have been used by others to promote political and religious views which is despicable. The guilty people here, if there are any, are those who promoted the idea that there was some sort of 'cure' for this poor baby; at best there was an arrest of symptoms as his brain damage was irreversible. I would like to think ( but don't hold out much hope) that the press will leave them alone and that the Charlie's Army will leave them alone to grieve.

Just before my husband died a friend was badly injured in a rugby match , in a coma for quite some time , his family were told he would be in a vegetated state for what ever time he had left. I was told how much worse this would have been for my husband than death. Whilst I knew my husband would say the same I wanted him in that hospital bed than in his grave . The injured friend made a very slow recovery, was in a wheel chair but did much in the town and saw his children grow up. His partial recovery was not expected, I still remember my feelings when I met him at meetings. So I can understand why these parents clung to hope , whilst their baby was not in his grave they could still hope for a miracle. They are not guilty of prolonging his poor quality of life .

Of course, paddyann, and let's hope the media leave them in peace to grieve.

have you never been in denialday6 ,then you are very lucky sometimes its the only way we can cope with what life has thrown at us.My heart breaks for these young parents,thay did everything in their power to save their precious boy and in their minds they failed.The grief etched on their young faces was heartbreaking to see.Surely we all hope that life will be kinder to them in the coming years

I can't agree that the supporters of the parents are over emotional,

You have been fortunate with your medical treatment , not e eryone has Iam

Respect and deference for authority figures is much reduced. In recent years, I've had more contact with various medical staff and specialists than I'd have chosen. I may simply have been lucky but I have only experienced a very high level of skill, knowledge and support. My questions have been answered. The cardiologist went off to research something dr google had suggested to me about a possible link between medication I take for chronic serious health problems and the reason I was now seeing the cardiologist. He came back with all the relevant facts and spent some time discussing various treatment options.

The truth is, we all make mistakes. I haven't met a medical person who claims not to have done. They also save lives and improve the quality of lives for so many . The people in this situation who seem to think they know better than GOSH are the I'll informed and over emotional gang known as Charlie's Army.

The days when doctors were seen as God have gone, they save lives and they make mistakes.

I agree merlotgran. They have had the most heartbreaking year of their young lives. They deserve our sympathy and understanding. I believe they have been praised in court and by GOSH. For pity's sake let's leave them alone now.

The poor parents now have to face the most heartbreaking part of all this. Whether or not we think they were right in prolonging their son's life in the hope of a cure it's time for everyone to back off and leave them to their grief.

I doubt that will happen though

Thank you for posting the GOSH statement.

I am in awe of the Doctors and nurses of GOSH who treat very sick children with care and expertise. The whole backlash against the staff is quite sickening I feel. I can understand the parents of Charlie wanting to give him the best chance possible, but they've refused to accept the guidance of experts and gone instead to a Doctor in the USA offering experimental treatment. It's almost like a carrot was dangled and I don't suppose we'll ever know how genuine and ethical the motives of the American team were. They were looking on from afar, without access to Charlie's records and test results.

It's right to challenge injustice and even mistreatment, but the parents view that their son's care was in some way negligent because Doctors felt Charlie's condition would not respond to the available treatment is very worrying.

What next? The parents' compensation case against GOSH?

Their pain is great and to lose their son is so sad, but, and this is contentious but it's been said, were they culpable in prolonging Charlie's distress and sickness, even if their motives were driven by love?

Poor baby.

....poor little boy.....

How very distressing for everyone; and especially for this or little boy who is suffering in the middle of this circus.

It really does not sound as though this US professor has acted ethically - raising parents' hopes on the basis of no evidence examined. It sounds as though he is an academic rather than a clinician, who has to weigh up the science against the needs of real patients.

I am very sad to hear that he had a financial interest in this experimental treatment.

I am afraid that Charlie's Army represents a lethal combination of ignorance and the magnetic attraction of the media spotlight. Unspeakably shocking.

Sadly with a case like this I think it is always likely to be too late. No one is going to want to use an untried treatment on a baby while there is still hope that tested therapies may help. Once you've passed that point there is little hope for the new treatment either.

No, I wasn't referring to the monetary aspect, paddyann. I meant the part where he said it was now 'too late' for any treatment to help Charlie.

I think he just meant that the money raised will go to Charlies foundation for research .I certainly didn't think he was threatening retribution by saying his sons spirit would live on and help others

I'm very concerned about the emotive words used by Charlie's father in his statement.

I do think feelings will be inflamed even further now and 'Charlie's Army' is certainly not going to go away quietly.

Thanks Cold for posting the link to the Court Statementbbybthe barrister representing GOSH. It's thorough, sensitive, compassionate to Charlie and his parents. Why can't our media summarise this accurately.

It is probably very cynical of me to doubt his motives for originally considering taking on the case, but it is a very rare condition, and the Professor may not get many babies on which to test (and publicise) his drugs, which have been used on someone with a similar condition but not this specific one.

However, it took him from January to July to actually come over to see his prospective patient, and in between he does not seem to have familiarised himself with his notes.

It says so in the GOSH statement Sparklefizz. What a moving account. Especially worrying was the part about medical experts believing that some of Charlie's responses showed he felt pain. I hope Charlie's parents continue to believe that he didn't, it would be very difficult for them if at any point they came to think they had kept him alive and in pain.

I read online - not sure if it's true - that the American doctor had a financial interest in the drugs he was trying to promote for little Charlie.