Charlie Gard: Parents end legal fight to take sick baby to US for experimental treatment

Couple 'truly devastated' by results of new medical tests on the 11-month-old

Katie Forster
Health Correspondent
Monday 24 July 2017 15:28
Charlie Gard: Parents end legal battle over treatment for terminally-ill baby

The parents of baby Charlie Gard have ended their High Court fight to take their critically ill son to the US for treatment, putting an end to a five-month legal battle with British doctors that polarised opinion around the world.

Connie Yates and Chris Gard said “it is no longer in Charlie’s best interests” to receive experimental nucleoside therapy after he was shown to have suffered irreversible muscular damage.

Barrister Grant Armstrong told a High Court judge the couple were “extremely distressed” by the results of the new medical tests on the 11-month-old, who has a rare genetic disease. He said a “window of opportunity has been lost” to help Charlie, as the damage meant “the treatment can no longer be a success”.

The decision concludes a bitter legal fight from Ms Yates and Mr Gard, whose appeal was previously rejected by the European Court of Human Rights. Doctors at London’s Great Ormond Street Hospital maintained that the experimental therapy had little chance of success and it was kinder for the baby’s life support to be switched off.

Charlie, born on 4 August 2016, inherited the faulty RRM2B gene that affects the cells responsible for energy production and respiration, leaving him unable to move or breathe without a ventilator. In an emotional statement outside the court, Mr Gard said the infant would not make his first birthday in less than two weeks.

The case has caused an international furore, with both Donald Trump and Pope Francis offering to help the sick baby. US lawmakers passed an amendment to grant Charlie permanent residency in America so he could fly there for treatment, while activists including controversial evangelical pastor Patrick Mahoney travelled to London to campaign on behalf of the parents.

Judge Nicholas Francis was due to make a ruling in a fresh hearing of the case this week after examining claims of new evidence about how effective the new treatment was likely to be.

In a statement read by a tearful Mr Gard outside the High Court, Charlie’s parents said the last year had been “the best, the worst and ultimately life-changing months of our lives” but “all our efforts have been for him”.

“We are truly devastated to say that following the most recent MRI scan of Charlie’s muscles ... we have decided that it’s no longer in Charlie‘s best interests to pursue treatment and we will let our son go and be with the angels,” they said.

Charlie Gard’s parents address the media outside the High Court today

Charlie’s parents said “a whole lot of wasted time” was to blame for their child’s muscles having deteriorated to such an extent, claiming: “Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy.”

“Our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought.

“We have been told time and time again that Charlie has a ‘progressive disease’ but rather than allow treatment 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.”

Ms Yates and Mr Gard said they were aware the case had caused controversy, but asked for all protests to stop as they wish to treasure their remaining time with Charlie. Their lawyer said the couple in their 30s, from Bedfont in west London, would now hold discussions with Great Ormond Street about how their son should be allowed to die.

Legal proceedings have been fraught, with frequent verbal clashes between the hospital’s lawyers and the parents. Mr Gard shouted “evil” in court while Ms Yates screamed and broke down in tears after they were told the new MRI scan results made for “sad reading”. The couple also said they had been victims of a “backlash” after Great Ormond Street revealed its staff had received death threats related to the case.

Mr Justice Francis said no one could begin to understand the parents’ agony but they now had to “face reality” that it is in their son’s best interests for life support to be removed. “Many opinions have been expressed based on feelings rather than facts,” he said in his judgement.

The judge paid tribute to Mr Gard and Ms Yates “for the love and care which they have at all times given to their wonderful boy Charlie”.

“There are few, if any, stronger bonds known to humankind than the love that a parent has for his or her child; to lose a child, particularly at such a tender age, and in such tragic circumstances, is grief of a magnitude of immense proportions,” he added.

“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.”

The couple said the new scan on Charlie’s muscles had been requested by US neuroscientist Michio Hirano, who was offering to give Charlie nucleoside therapy. Dr Hirano travelled from New York to London last week to examine the baby.

In their statement, the parents, who raised more than £1.3m to pay for therapy in the US, said their son is “not brain dead (and never has been)”.

“He still responds to us, even now, but after reviewing the recent muscle MRI it was considered that Charlie’s muscles have deteriorated to the extent that it is largely irreversible,” they said. “Were treatment to work, his quality of life would now not be one which we would want for our precious little boy.”

Great Ormond Street paid tribute to the “bravery” of the decision made by Charlie’s parents, adding that over the weekend, they had worked with doctors to formulate the best possible plan for his palliative care, while saying they will spend all the time they can with their son.

A legal statement issued by the hospital said that from the moment of his diagnosis, “Charlie’s prognosis was known to be bleak”.

“The early infantile onset of his extraordinarily rare disease, his generalised myopathy and the respiratory failure which left him dependent on a ventilator, were all factors indicating that his life’s span was likely to be very limited indeed.

“Despite the sombre prognosis, GOSH’s mitochondrial expert contacted counterparts across the world, including Professor Hirano, to explore the possibility of experimental treatment.”

However, no human or animal with Charlie’s particular genetic deficiency has ever been treated with nucleoside therapy before.

The hospital said all of its thoughts were “with Charlie and his mother and father” and it wished “each of them peace in their hearts at the end of this day and each day to come”.

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