'We had a chance and we were not allowed': Charlie Gard's parents blame hospital as they end legal fight to save baby's life

Charlie Gard’s parents accused Great Ormond Street Hospital of delaying treatment until it was too late as they gave up their legal fight to save “their warrior son”.

Charlie’s life support will be switched off in the coming days after his parents dropped a court battle for the right to take him to New York for experimental therapy. 

Connie Yates, Charlie’s mother, told the court that her “sweet, gorgeous, innocent little boy” will not now live to see his first birthday in less than two weeks’ time.

In a deeply moving statement Miss Yates, 31, complained that the world renowned children’s hospital had “wasted time” in refusing to allow doctors from abroad to treat her son. Charlie suffers from a rare genetic disease - mitochondrial DNA depletion syndrome - that the hospital said had left him severely brain damaged.

With Chris Gard, her partner and Charlie’s father at her side, Miss Yates told the High Court: “Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy.”

With tears streaming down her cheeks, Miss Yates said: “The last 11 nearly 12 months have been the best, the worst and ultimately life changing months of our lives, but Charlie is Charlie and we wouldn’t change him for the world. All our efforts have been for him.

“We are about to do the hardest thing that we’ll ever have to do which is to let our beautiful little Charlie go.”

The parents had been told by Professor Michio Hirano, a New York neurologist who has pioneered an experimental therapy for children with a similar condition to Charlie, that there had been a chance of helping their son. The case had become a cause celebre with support from the parents coming from Donald Trump and Pope Francis and a 500,000 signature petition calling on the hospital to let Charlie go abroad for treatment.

Miss Yates said it was “unfortunate” that Prof Hirano had not been given access to GOSH’s “raw data” in April - at the time of a previous High Court hearing - that showed “no actual evidence of irreversible brain damage”.

Two doctors had said further scans carried out last weekend  had not shown “irreversible” brain damage, as the hospital had claimed earlier this year, but a new body MRI scan on Friday had revealed “irreversible” deterioration of his muscles that meant he was untreatable.

Miss Yates: “They [the doctors] both agreed that treatment should have been started sooner. There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now - time. A whole lot of wasted time.

“Charlie had a real chance of getting better. It’s now unfortunately too late for him.”

She went on: “We are now in July and our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought.”

Miss Yates said her son remains an “absolute warrior”, adding: “We could not have more love and pride for our beautiful boy. His body, heart and soul may soon be gone, but his spirit will live on for eternity and he will make a difference to people’s lives for years to come.”

She said comfort came from knowing “Charlie may have been too special for this cruel world” and said she and her partner now wanted to spend as much time with Charlie before his ventilator is removed.

“We are now going to spend our last precious moments with our son Charlie, who unfortunately won’t make his first birthday in just under two weeks’ time,” she said, adding: “Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you. We had the chance but we weren’t allowed to give you that chance.

“Sweet dreams baby. Sleep tight our beautiful little boy. Charlie Matthew William Gard. Our little hero.”

The parents’ barrister Grant Armstrong described the events as “worthy of a Greek tragedy” that just as it appeared the court might have relented and allowed Charlie to be taken abroad, the final scan had shown irreversible muscular damage. Mr Armstrong said: “Sadly, due to the considerable delay in the commencement of treatment that right and the window of opportunity has been lost for Charlie.”

Mr Armstrong added: “Charlie’s neurological condition now is in fact still considerably better - showing there to be no brain death - than the witness evidence presented to this court by GOSH in April 2017.”

Great Ormond Street defended its treatment of Charlie, insisting it had begun the process of seeking experimental therapy before the little boy began having seizures in December last year that continued into the following month. “The entire treating team formed the view that Charlie had suffered irreversible neurological damage” which had prompted the hospital to seek an application to withdraw life support and offer the boy only palliative care.

In a statement released to court, the hospital’s barrister Katie Gollop QC said it disputed the claims that Charlie had not suffered brain damage and that there had been “no real change in Charlie’s responsiveness since January”.

The hospital said it had invited Prof Hirano to examine Charlie in January. “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,” said Ms Gollop.

The hospital also claimed Prof Hirano had given the parents false hope by claiming he had new “laboratory findings” to suggest his treatment would be more beneficial than he previously realised. 

Ms Gollop added: “All of GOSH’s thoughts go with Charlie and his mother and father - the hospital wishes each of them peace in their hearts at the end of this day and each day to come.”

Mr Justice Francis, who ruled in April that Charlie should be allowed to ‘die with dignity’, praised both the hospital and the parents in the heartrending case. 

He said of the GOSH staff that received death threats and ‘vile’ abuse: “Each and every man and woman working at Great Ormond Street Hospital is dedicated to the treatment of sick, very often desperately sick, children. 

“It is, in my judgment, a disgrace that they should have been subjected to any form of abuse whatsoever and it is to be condemned.”