Charlie’s parents: Sleep tight, beautiful little boy
Parents of baby at centre of UK court battle set to let him die
THE parents of gravely ill British baby Charlie Gard bitterly condemned doctors yesterday after they made the heartbreaking decision to let their baby son die.
Connie Yates reduced a courtroom to tears while accusing London children’s hospital Great Ormond Street of wasting so much time her little boy no longer had hope.
‘We are so sorry we couldn’t save you,’ she said. ‘We had the chance but we weren’t allowed. Sweet dreams baby. Sleep tight our beautiful little boy.’
Even the judge appeared to wipe away a tear when Ms Yates said her ‘warrior’ son wouldn’t live to see his first birthday next week. His life-support system will be withdrawn after his parents reluctantly gave up their eight-month crusade to win treatment for his extremely rare and devastating muscle-wasting condition.
As relatives in the public gallery sobbed, Ms Yates, 31, said her son’s brain was never as damaged as the hospital claimed. But a new scan last week revealed his muscles had deteriorated so much, the experimental treatment being offered by a doctor in the United States would now be hopeless. On a day of great drama:
Great Ormond Street said the American doctor had a financial interest in the drugs he was offering Charlie – and accused him of offering ‘false hope’;
The judge condemned social media for encouraging people ‘who know almost nothing’ spreading gossip about the case;
Members of a ‘Charlie’s Army’ of supporters burst into tears outside court and shouted into megaphones about the hospital ‘failing’ the 11-month-old;
Ms Yates declared the legacy of her ‘sweet, gorgeous, innocent little boy’ would be to save other sufferers of his rare condition;
She vowed to help others battle medics so ‘no parents have to go through what we have been through’;
She said Charlie had a greater impact on the world in 11 months than most do in a lifetime;
The hospital praised the parents’ ‘brave’ decision to end his life;
The Vatican said Pope Francis was praying for the family and ‘feels especially close to them’;
His parents’ final wish for Charlie be allowed home to die was still not settled last night.
Ms Yates said yesterday: ‘There is now no way back. Charlie did have a real chance of getting better if only therapy was started sooner.’
She said Great Ormond Street should have trusted them with the decision to take Charlie to the US and said: ‘We only wanted to give him a chance of life’.
Ms Yates and Mr Gard gave away nothing of the shock to come as they arrived at the High Court in London for what was expected to be a two-day hearing.
They have been battling the hospital in the courts since March for the right to take Charlie to New York for experimental drugs on his rare form of mitochondrial disease – which saps energy from his organs and muscles.
But instead of the case continuing, Grant Armstrong, for the parents, told the judge: ‘Poor Charlie. It is too late. The damage has been done. Sadly time has run out.’
He claimed Charlie’s brain condition was ‘considerable better’ than stated by hospital doctors, and said the case might have turned out differently if the hospital had shown the raw data from scans in January to his second-opinion doctors, led by Professor Michio Hirano in the US and an Italian at the Pope’s hospital in Rome.
At the end of yesterday’s 45minute hearing, and with the judge’s permission, Ms Yates went into the witness box with Mr Gard and held the court spellbound as she delivered an excoriating and emotional 2,000-word statement.
She said: ‘There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now – time. A whole lot of wasted time. Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy.
‘The American and Italian team were still willing to treat Charlie after seeing both his recent brain scans performed last week. He is not brain dead, and never has been. He still responds to us, even now.’
But she said his muscles had been ravaged as he lay waiting for someone to treat him.
‘His quality of life would now not be one which we would want for our precious little boy,’ said Ms Yates. ‘Our poor boy has been left to just lie in hospital for months without any treatment while lengthy court battles have been fought. Rather than allow treat-
‘We only wanted to give him a chance’ ‘Save many more lives’
ment for him with a medication that was widely accepted to have no side effects, Charlie has been left with his illness to deteriorate, sadly, to the point of no return.’
As relatives wept, she added: ‘Our son has an extremely rare disease for which there is no accepted cure but that does not mean that this treatment would not have worked, and it certainly does not mean that this shouldn’t have been tried. It was never false hope. Now we will never know.’
Ms Yates denied the case was about ‘parents know best’, saying despite being ‘two normal everyday people’, they had listened to experts worldwide.
‘We have never done this for selfish reasons. We didn’t keep him alive just because we couldn’t bear to lose him. Charlie had a real chance of getting better,’ she said.
Ms Yates promised her ‘hero’ son’s ‘legacy will never, ever die’. He will die before his first birthday on August 4, but so far it has not been settled where and when. She said: ‘Charlie has had a greater impact on and touched more people in this world in his 11 months than many people do in a lifetime. We could not have more love and pride for our beautiful boy.
‘The next Charlie that comes along will get this medicine before it’s too late and Charlie will save many more lives in the future.’
Great Ormond Street told the court the ‘clinical picture’ six months ago had shown irreversible damage to Charlie’s brain, and that the ‘unstoppable effects’ of his rare illness had become plainer as weeks passed. Katie Gollop QC, for the hospital, said: ‘Charlie’s parents believe that his brain was not damaged, that it was normal on the MRI scan in January and that treatment could have been effective at that time. There remains no agreement on these issues.’
She added that her heart went out to the parents and she praised their bravery. Ms Gollop said the hospital would review the case to see if it could improve its procedures.
The judge said: ‘It is impossible for any of us to comprehend or even begin to imagine the agony to which Charlie’s parents have been subjected. There are few, if any, stronger bonds known to humankind than the love that a parent has for his or her child.
‘These parents should know that no parent could have done more for their child. They have, however, now accepted that Charlie’s life cannot be improved and that the only remaining course is for him to be given palliative care and to permit him to die with dignity.’