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How new brain scans showed Charlie Gard could not be helped How new brain scans showed Charlie Gard could not be helped
(about 3 hours later)
Charlie Gard’s parents were told last year that their son had irreversible brain damage, but they did not believe the diagnosis and were desperate to try anything that might help him. The end of the legal battle for treatment overseas came when the latest brain scans confirmed not only to the child’s parents but also to the US doctor in whom they had placed their hopes that nothing could improve his condition. Charlie Gard’s parents were told that their son had irreversible brain damage after he suffered seizures before Christmas, but they did not believe it. They maintained that an MRI scan in January showed the brain was normal. That has been the crux of the difference between parents and the hospital. Connie Yates and Chris Gard, bolstered by the opinions of doctors in other countries who had not seen their child, believed treatment was possible.
“Charlie’s condition is exceptionally rare, with catastrophic and irreversible brain damage,” Great Ormond Street hospital (Gosh) said in a statement on 13 July. That was always the hospital’s position. “Charlie’s brain was shown to be extensively damaged at a cellular level,” it said on an earlier occasion. Their hopes came to an end at the weekend, after Michio Hirano, the US neurologist who had offered an experimental drug therapy, finally accepted an invitation that had been open since Christmas to come to London and see Charlie. He was expected to explain in court the new evidence that he said suggested nucleoside bypass therapy (NBT) could help Charlie.
Gosh followed the procedures laid down for such cases. Treatment, including the nucleoside therapy that Charlie’s parents wanted, would not cure him or improve his condition, doctors said, and could cause further pain and suffering. So when the boy’s parents rejected the advice that the kindest thing would be to switch off the machines keeping him alive, the hospital went to court and got the order they requested. Instead, the parents’ lawyer stood up to say they were ending their legal fight. He stated that Charlie’s muscle wastage meant it was too late to treat him. But Hirano, who had not seen Charlie, the scans or the medical notes when he made a first appearance in court on 13 July, had been shown new imaging of the brain damage that Great Ormond Street hospital (Gosh) had always said was irreversible.
The seven doctors from Italy and the US who then wrote to Gosh saying there was new evidence that nucleoside therapy could possibly improve his condition had not examined the child or seen recent brain scans. Michio Hirano, the neurologist who had offered to treat Charlie, told the court last week that the previous scans he had seen did not show evidence of irreversible brain damage. Charlie has a very rare mitochondrial disease caused by a genetic defect inherited from his parents. The diagnosis is infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as MDDS. It causes the body’s cells and then organs to shut down. Charlie cannot move or breathe by himself, is deaf and has epilepsy. The outlook, Gosh always said, was bleak. Even so, Gosh contacted international experts including Hirano, to find out whether NBT was an option.
But that was before he and Charlie’s parents, Connie Yates and Chris Gard, had been shown the latest set of scans, which the hospital’s QC, Katie Gollop, said in court made for “sad reading”. The seizures caused brain damage that made the Gosh doctors – also experts in this field – convinced that Charlie could not recover. They also believe he is in pain. “Even now, Charlie shows physical responses to stressors that some of those treating him interpret as pain and when two international experts assessed him last week, they believed that they elicited a pain response,” said the Gosh statement on Monday.
In court on Monday, Grant Armstrong, representing Charlie’s parents, said “it is no longer in Charlie’s best interest to pursue this course of treatment”. He added that the child had “suffered severe muscular atrophy” and “the damage to his muscles was irreversible”. This was the advice given to the boy’s parents and the courts by Gosh doctors at the end of last year. But Yates and Gard, convinced he could recover, rejected the advice that the kindest thing would be to switch off the machines keeping him alive, so the hospital went to court and got the order they requested.
Armstrong told the court that “the parents’ worst fears have been confirmed … It is now too late to treat Charlie.” One of the remaining controversies will be whether he could have been treated with any success at some point earlier in the year, in the months that have elapsed while the legal battle continued. Gard and Yates may think so. Gosh is likely to deny it. They continue to believe Charlie could have recovered if he had been given NBT in the early part of this year. Gosh, however, thinks they were misled. The new evidence was not helpful. “Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie,” said the hospital.
The life support machines that have been keeping Charlie alive will not be switched off instantly. The hospital will try to accommodate his parents. This was the statement made after the courts ruled Charlie should be allowed to die with dignity: “At Great Ormond Street hospital, our priority in situations like this is to work closely with the family to discuss the next steps in their child’s care. It would give thought to what it could learn from “the bruising court case”, it said. “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.”
“In Charlie’s case we have been discussing for many months how the withdrawal of treatment may work. There would be no rush for any action to be taken immediately. Discussions and planning in these situations usually take some days – based on the experience of our clinical teams.” The life support machines that have been keeping Charlie alive will not be switched off instantly. The hospital will allow his parents to spend more time with their baby before they have to let him go. “All of Gosh’s thoughts go with Charlie and his mother and father. The hospital wishes each of them peace in their hearts at the end of this day and each day to come.”