Doctors can withdraw life-support treatment from a baby with a rare genetic condition against his parents’ wishes, a High Court judge has ruled.
There was a scream of ‘no’ in the court as the decision about eight-month-old Charlie Gard’s care was announced by Mr Justice Francis, who had analysed evidence over three days and had visited the child at Great Ormond Street Hospital
Charlie’s parents are ‘devastated’ by the High Court decision about ending his life-support and are struggling to understand why the judge had not ‘at least given Charlie the chance of treatment’, their solicitor Laura Hobey-Hamsher said.
Specialists at the hospital in London think it is time to stop providing life support treatment for Charlie.
Doctors say the boy, who suffers from a rare genetic condition and has brain damage, should move to a palliative care regime.
But Charlie’s parents, who are both in their early 30s, disagree.
Postman Chris Gard and Connie Yates, of Bedfont, west London, want to be allowed to take him to a hospital in the US for a treatment trial.
Mr Justice Francis ruled that life-support treatment should stop after analysing evidence at a hearing in the Family Division of the High Court in London.
Charlie, who was born on August 4, 2016, has a form of mitochondrial disease, a condition which causes progressive muscle weakness and brain damage.
His parents launched an appeal on the GoFundMe website two months ago, saying they needed £1.2 million to fund treatment.
They reached their target on Sunday and more than 80,000 people have donated money.
A GoFundMe spokesman said officials would have discussions with Charlie’s parents about what would happen to money raised for treatment.
He said: ‘We’ll be speaking privately to the family in the next few days about what they want to do and how we can support them.’
The judge said he had decided Charlie should be allowed to die with dignity.
He praised the little boy’s parents for their campaign and paid tribute to their devotion.
He said: ‘It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that Great Ormond Street may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.
‘I want to thank the team of experts and carers at Great Ormond Street, and others who cannot be named, for the extraordinary care that they have provided to this family.
‘Most importantly of all, I want to thank Charlie’s parents for their brave and dignified campaign on his behalf, but more than anything to pay tribute to their absolute dedication to their wonderful boy, from the day that he was born.’
Mr Justice Francis analysed evidence at a hearing in the Family Division of the High Court last week.
Barristers outlined competing arguments.
Debra Powell QC, representing Great Ormond Street bosses, said life support treatment should stop.
She said Charlie is largely unable to move and has significant irreversible brain damage.
She said a number of ‘world-renowned’ experts are in agreement.
She said Charlie’s parents have given their son ‘complete and unwavering’ love and support.
But she said Charlie should not get long-term life support treatment because his ‘quality of life’ is ‘so poor’.
Barrister Victoria Butler-Cole, who was instructed by a guardian appointed by the judge to independently represent Charlie’s interests, also said doctors should stop providing life-support treatment.
She said the treatment proposed in America is not ‘pioneering or life-sustaining’ but a ‘purely experimental’ process which has ‘no real prospect of improving Charlie’s condition or quality of life’.
She said continuing life-support treatment will not benefit Charlie but only ‘prolong the process of dying’.
She suggested that the treatment would be ‘futile’ and said the idea that it will help is ‘not so much a chance as a wish’.
Barrister Sophia Roper, representing Charlie’s parents, said the baby should be given a chance to improve.
She said he will not suffer significant harm if he undergoes treatment in America.
She said his parents think there is a chance that their child will improve.
She said his parents’ wishes should carry ‘great weight’.
What is mitochondrial depletion syndrome?
Charlie Gard was born with mitochondrial DNA depletion syndrome.
The baby is said to be one of only 16 people to be diagnosed with it in the world.
Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support organ function
The heart, brain, muscles and lungs rely on this the most.
But the disease affects each individual differently.
Symptoms include seizures, strokes, severe developmental delays, inability to walk, talk, see, and digest food.
In Charlie’s case, he is unable to get energy to his muscles, kidney and brain.
It is typically fatal in infancy and early childhood, and there is no known cure.
But parents, Connie and Chris, were hoping to try a treatment called nucleoside bypass therapy to help reduce the affects.
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