An eight month old boy being denied “potentially life-saving” treatment at Great Ormond Street would be given it at any hospital in America, a court has heard.
The parents of terminally ill Charlie Gard broke down in tears as they listened to medical evidence relating to his rare genetic condition and what his doctors say is a “vanishingly small” chance of his survival.
But an American doctor who has agreed to attempt a pioneering treatment for his mitochondrial disorder, said that it was “reasonable” to attempt to save his life and if he were in a hospital in the USA his parents would have the option.
Great Ormond Street, where Charlie is currently being treated, have applied to the High Court in for permission to withdraw life support and argue that he should not be taken abroad for treatment as it will prolong his suffering.
His parents, Connie Yates and Chris Gard, who clutched his son’s toy monkey throughout the hearing, disagree and have raised £1.2 million in less than a month to pay for treatment.
The money, which has included donations of £10,000 from Tamara Ecclestone and £40,000 from housewife Helen Barnes who was moved by the family’s plight, will pay for an Air Ambulance to the United States and nucleoside therapy, which the court heard had never been attempted on a human or an animal with Charlie’s condition.
He was born with a condition so rare it only affects a handful of people in the world. It saps energy from the organs and has left him blind and deaf. Doctors believe he has also suffered brain damage.
Miss Yates, 31, broke down in tears as the doctor in the USA, who cannot be identified for legal reasons, said Charlie was in the “terminal” stages of his illness and he will “certainly die without treatment”.
The condition is normally fatal within the first year and all 20 children known to have suffered it have passed away.
The doctor, one of the leading experts in the field worldwide, said treated patients with a similar type of mitochondrial disease, but it had only affected their muscles not their muscles and their brain, as was the case with Charlie.
In studies on mice where the similar condition did effect the brain they managed to prolong their lives up to three fold, but this was only four per cent of their lifespan.
Giving evidence over the phone from a hotel room, the doctor admitted that he had not realised how ill Charlie was, adding that it was “very concerning, he seems to be very severely affected neurologically, that makes me a bit less enthusiastic about having him come to the United States.”
But he said that if Charlie had fallen ill in his hospital or “any institution in the US” then they would attempt the radical treatment, which should not put Charlie through any additional pain.
However, the professor involved in his care at GOSH, who also cannot be named, said that there were “cultural differences” in the UK.
She said “if we don’t consider something is in the child’s best interest” then they would not do it, but “in America, provided parents have the money, the financial means to access care, doctors will do anything parents would like to be done regardless of what is happening to the child."
She argued that it was “highly likely” that Charlie was in pain but was unable to show it because of the severity of his disabilities, but admitted that it was “possible” the he could also experience “pleasure” through interaction from his parents and being cuddled by them.
When pushed on why the parents should not be given the chance to try and save him, no matter how slim his chances, the paediatric specialist said: “This is a treatment that could have theoretically been given here, but we don’t think that it is the right thing for this child because of the suffering and extent of his neurological damage.”
The American specialist said that it would be a “treatment but not a cure”, adding that if it managed the condition “then he would presumably be able to interact with others – to smile, to look at objects, to get to use his hands in a meaningful way to grab objects.”
He said he was aware that a hospital in Barcelona had already refused to treat Charlie, but he noted it was “unchartered territory” and there was a tiny hope for the family from the treatment which was unlikely to have negative side effects.
Put to him that the chances of Charlie’s survival were “vanishingly small”, the doctor said: “I would hope that he would regain some brain function but the chances of meaningful brain function would be small.”
The case continues on Wednesday, when Charlie’s parents are expected to give evidence.