Update: Charlie Gard has died R.I.P

Originally Posted by Mick

The parents believed he did not have significant brain damage earlier on, they show a photo of him in early days in Superman outfit, eyes open and responding normally, he looked like a healthy baby boy.

It's a progressive condition. I don't know when those photos were taken but I doubt it was when GOSH recommend ending life support which is when this court process started.

Originally Posted by Mick

GOSH have gone down in my estimations. No parent should have to fight the courts in such time wasting fashion. No doctor is right 100% of the time.

No but GOSH sought second opinions which their statement claims were not reviewed but this American doctor. Why should we trust his judgement that his treatment would have worked had it been administrated earlier when he didn't visit the patient or review the records from that time?

The only doctors who personally examined Charlie Gard concurred with GOSH it seems.

Originally Posted by Mick

What an embarrassment our health system now looks to the rest of the world.

I think thats being a little bit over dramatic.
The doctors do what they think is best, and by the look of this they got multiple opinions before making that decision.
I havent seen any real evidence that he would have survived other than a so called "miracle" cure. How many others with his exact condition have been cured ?

Its never been tested on the condition he has (which is apparently so rare there have only been 16 recorded cases);

The drug has not even been tested on mice for Mitochondrial DNA depletion syndrome.

However, doctors say it has been tested on mice and patients with a different mitchondrial condition and has brought about “dramatic clinical improvements”.

A US expert said 18 people have been treated with nucleoside bypass therapy. But he added that none of them were in a condition as severe as Charlie’s.

In fact, it seems that back in January, the doctors were willing to try this treatment, but then Charlie suffered further seizures and his condition got worse to the point they no longer considered it a viable choice.

Parents want to take Charlie home to die, to let him die at home, in comfort and with dignity, lawyers for family say, GOSH putting obstacles in the way of the parents even being allowed to do this.

Originally Posted by Mick

Parents want to take Charlie home to die, to let him die at home, in comfort and with dignity, lawyers for family say, GOSH putting obstacles in the way of the parents even being allowed to do this.

GOSH's concern seems to be the ability to administer palliative care (i.e pain relief) and have suggested a hospice.

Originally Posted by Mick

Parents want to take Charlie home to die, to let him die at home, in comfort and with dignity, lawyers for family say, GOSH putting obstacles in the way of the parents even being allowed to do this.

I havent looked yet so this maybe off the mark, but given the life support machines are basically the only thing keeping him alive (and pain free) I would imagine they think its difficult to unhook him, and then transport him to a home without causing him further pain, and him maybe dying before he ever gets home.

[papa smurf]

Originally Posted by Mick

Parents want to take Charlie home to die, to let him die at home, in comfort and with dignity, lawyers for family say, GOSH putting obstacles in the way of the parents even being allowed to do this.

this just stinks , who would trust them with another child after this debacle and hospice care is just pumping you full of morphine until your heart gives in your pain managed to death .

[denphone]

Originally Posted by Mick

Nor me. The stupid legal battles and delays have robbed that poor boy of a chance of life.

An American dad whose son had same condition as Charlie and was treated by same doctor willing to treat Charlie in the US has blasted U.K. doctors, his son now has a better quality life. What an embarrassment our health system now looks to the rest of the world.

Not for me as l can only talk about my own personal experiences over the last 20 years having to go to specialist hospitals a lot and the treatment and care l received was exemplary to say the least plus the staff however high up treated me as one of the family even when important discussions were taking place regarding my ongoing health management plans.

Originally Posted by papa smurf

this just stinks , who would trust them with another child after this debacle and hospice care is just pumping you full of morphine until your heart gives in your pain managed to death .

Better than being in a lot of pain until you die.

Originally Posted by papa smurf

this just stinks , who would trust them with another child after this debacle

Pretty much anyone whose child is in need of hospital / medical treatment.

[weenie]

Truly horrendous this situation is and I cannot even imagine it at all, part of me thinks please GOSH let him pass away at home if this can be arranged without causing further pain and discomfort just please give these poor parents a memory of having their son at home. Yet the other part of me is thinking please just stop battling now you have did all you can but sadly now the time has come to now spend what precious time you have left with your baby boy, take him in your arms and cherish your final moments.

[Mr K]

Originally Posted by weenie

Truly horrendous this situation is and I cannot even imagine it at all, part of me thinks please GOSH let him pass away at home if this can be arranged without causing further pain and discomfort just please give these poor parents a memory of having their son at home. Yet the other part of me is thinking please just stop battling now you have did all you can but sadly now the time has come to now spend what precious time you have left with your baby boy, take him in your arms and cherish your final moments.

Seems to be confrontation for confrontations sake atm, with lawyers all over it trying to make as much money as possible. These parents have been very badly advised, they should be speaking to Drs and Nurses, not lawyers and newspapers, and spending time with their son, not in the courts.

I hope they get what they want..but I am glad that they have been able to finally accept that it's time to let go.

Let us not forget that those caring for Charlie Gard may well be parents themselves and can empathise only too well but have to balance what the parents want with the needs of their patient.

[TheDaddy]

Originally Posted by weenie

Truly horrendous this situation is and I cannot even imagine it at all, part of me thinks please GOSH let him pass away at home if this can be arranged without causing further pain and discomfort just please give these poor parents a memory of having their son at home. Yet the other part of me is thinking please just stop battling now you have did all you can but sadly now the time has come to now spend what precious time you have left with your baby boy, take him in your arms and cherish your final moments.

It's not really his home though, he's spent most of his short life in that hospital and apparently the equipment he needs is to big to fit through the front door and there's not enough room inside their house for it anyway, couldn't this have been sorted with a tape measure rather than a lawyer. I hope the nhs lawyers are retained rather than charging by the hour! Seems a shame they're wasting precious time in court imo to

BREAKING: Charlie Gard has died. RIP little man.