Parents face their worst fears as time runs out for baby Charlie
BRITAIN: Charlie Gard will not reach his first birthday in less than two weeks, his parents said yesterday after they accepted that ‘‘time had run out’’ for the baby they described as their hero.
The long legal fight by Connie Yates and Chris Gard to take their terminally-ill son to the US came to an emotional end as they acknowledged that his muscles had irreversibly deteriorated and it was too late for treatment.
They insisted that had they been allowed to take Charlie for therapy sooner, he had had the potential to be a ‘‘normal, healthy little boy.’’
Doctors treating him at Great Ormond Street Hospital (GOSH), however, had argued for months that life-support treatment should be withdrawn and that the experimental treatment his parents wanted would not have helped him.
The couple took to the stand at the High Court in London to insist that in fighting a case that has divided commentators and attracted interventions from the Pope and Donald Trump, they had only ever wanted to give their ‘‘sweet, gorgeous, innocent little boy’’ a chance of life.
‘‘This is one of the hardest things that we will ever have to say and we are about to do the hardest thing that we’ll ever have to do, which is to let our beautiful little Charlie go,’’ Ms Yates told the packed court.
She said they were devastated that after a scan of the 11-monthold’s muscles on Friday, ‘‘as Charlie’s devoted and loving parents we have decided that it is no longer in Charlie’s best interests to pursue treatment and we will let our son go and be with the angels.’’
She said that after five months of legal battles and ‘‘a lot of wasted time,’’ his muscles had deteriorated to an extent that was ‘‘largely irreversible’’ and he now would not live until his birthday, which is on August 4.
The American doctor who had offered to treat Charlie with nucleoside treatment was criticised by the counsel for GOSH.
Katie Gollop, QC, paid tribute to Charlie’s parents, saying the ‘‘agony, desolation and bravery of their decision command GOSH’s utmost respect.’’
She said the couple, in their early 30s and from Bedfont, West London, had ‘‘fought long and hard for what they have been led to believe was a treatment that would give him a chance to be the Charlie he was before the effects of his illness became evident’’.
Throughout, their hopes ‘‘have been sustained by advice received from overseas’’, Ms Gollop said, but information obtained since July 13 confirmed that while nucleoside treatment may assist others in the future, it ‘‘cannot and could not have assisted Charlie’’. She added: ‘‘It is hoped that those who, like the professor, have provided the opinions that have so sustained Charlie’s parents, their hopes, and thus this protracted litigation with its many consequences, will also find much upon which to reflect.’’
Dr Michio Hirano of Columbia University Medical Centre in New York had been invited to see Charlie in January but did not take up the invitation until July 18, Gollop said. He had also told the court in evidence that he retained a financial interest in the compounds he wanted to prescribe.
The high-profile legal battle has attracted support from more than half a million people who helped raise £1.3 million (NZ$2.27m).
Lawyers gave the couple their services free but the court hearings could have cost up to £500,000.
Grant Armstrong, barrister for Charlie’s parents, said they hoped to set up a foundation with the £1.3 million so that lessons could be learnt.
‘‘Dark days lie ahead for these parents,’’ Armstrong said. ‘‘They wish to treasure their remaining time with Charlie, however short that may be.’’
Struggling to control his emotions, he told Justice Francis: ‘‘This case is now about time,’’ he said.
‘‘Sadly, time has run out.’’ He added: ‘‘The parents’ worst fears have been confirmed. It is now too late to treat Charlie.’’
Justice Francis paid tribute to Charlie’s parents and said that no one could comprehend their agony.
The judge praised Great Ormond Street staff who had worked ‘‘tirelessly’’. He said it was a disgrace that they had been subjected to abuse.
He also criticised cuts that left Charlie’s parents relying on lawyers working pro bono and suggested a review of the legal aid system.
Outside court, supporters calling themselves Charlie’s Army reacted with anger and tears, chanting ‘‘shame on you, judge’’ and ‘‘shame on GOSH’’.
- The Times