LONDON — The long journey for Connie Yates and Chris Gard, whose infant son, Charlie, cannot breathe or move on his own, appeared to have come to an end last week. The courts had ruled that the baby’s rare genetic condition was incurable and that the only humane option was to take him off life support. The couple announced that they were getting ready “to say the final goodbye.”
Then Pope Francis and President Trump weighed in, offering statements of support and thrusting a global spotlight onto a heart-rending case that has become a cause célèbre in Britain.
Their last-minute interventions drew attention to a profoundly difficult bioethical matter, but, experts said, they may have made a tragic situation even worse. Not only has the family exhausted its legal options, but numerous doctors have affirmed that no treatment was likely to reverse the child’s severe brain damage. Those doctors include a neurologist in the United States who had raised the couple’s hopes that an experimental therapy might save their son.
Nor is money the main issue, contrary to many of the confusing messages and news reports on the matter.
“The tragedy about this case is that the child is dying and there is nothing to stop that, and for a parent that is the worst thing in life,” said Robert D. Truog, a pediatric intensive care doctor at Boston Children’s Hospital and director of the Center for Bioethics at Harvard Medical School. “What the family needs is to come to terms with this and not to be fighting it. The efforts from the pope and Trump are feeding into their denial about what is going on with their child, and that is neither helping them nor the child.”
The couple’s lawyers declined to comment on Tuesday, and it was not clear if Ms. Yates or Mr. Gard, or the hospital treating their son, would take action in response to the pope or to Mr. Trump, who on Monday weighed in via Twitter. What is clear — based on a review of the extensive legal record in the case, including statements from numerous medical experts — is that the couple have been through extraordinary ups and downs, even by the standards of other families with terminally ill children.
“Charlie’s parents have clearly dedicated their lives to him from the moment that he was born,” a High Court judge, Nicholas Francis, wrote in April, expressing compassion even as he ruled against the parents. Their lives, he said, had been turned into “a living hell.”
Charlie Gard, born on Aug. 4, 2016, was a few weeks old when his parents noticed that he had trouble lifting his head. He was not growing and had to be put on a feeding tube. His breathing became shallow. On Oct. 11 he was admitted to Great Ormond Street Hospital in London, where he has lived ever since.
The baby was given a diagnosis of encephalomyopathic mitochondrial DNA depletion syndrome, which is thought to afflict just 16 children around the world. The disease blocks the mitochondria — the power stations in virtually every human cell — from creating energy. Deaf and kept alive by a ventilator, Charlie cannot grasp objects and suffers from persistent seizures.
In late December, while researching her son’s condition, Ms. Yates learned about nucleoside therapy, a treatment that has been used on patients with a less severe mitochondrial condition known as TK2 mutation.
She got in touch with the neurologist in the United States, who said there was a “theoretical” prospect of success, but acknowledged that nucleoside therapy had never been tested on a patient with the form of the disease, known as RRM2B mutation, as severe as Charlie’s.
Great Ormond Street Hospital was initially open to the idea, but then Charlie began to experience severe seizures, leading to a diagnosis of epileptic encephalopathy, a severe brain disorder. With that, doctors concluded that nucleoside therapy would only prolong the child’s suffering.
The parents received this message in a meeting on Jan. 13, a judge later found, but it is not clear if the situation was conveyed to them clearly. Later that month, the parents began a public campaign — one that eventually raised 1.3 million pounds, or about $1.7 million — to pay for the treatment, including travel to the United States.
Communications between the parents and their son’s doctors had grown tense; around this time, a pediatric intensive-care specialist emailed another doctor to say that the parents had thrown a “spanner,” or wrench, “in the works.”
On Feb. 24, the parents went to court. Justice Francis interviewed the neurologist — identified in court papers only as Dr. I — who, after reviewing records of the baby’s brain activity, conceded that the baby’s brain was more damaged than he had known; that the baby was in the terminal stage of his illness; and that “it is very unlikely that he will improve” even if the therapy were administered.
Dr. I agreed that the brain damage was irreversible, though he did not rule out the possibility that the therapy might produce some benefit — perhaps by allowing the boy to smile and grab objects. The parents insisted that they wanted to go ahead. “He deserves his chance,” Mr. Gard said, promising that if the treatment did not work, “we would let go.”
Justice Francis did not agree. Factoring in the “serious prospect” that Charlie might feel pain and the “consensus across the board, including from his parents, that Charlie’s current quality of life is not one that should be sustained without hope of improvement,” he ruled on April 11 that the hospital could withdraw all treatment except for palliative care.
The parents appealed, citing the case of Ashya King, a boy with a brain tumor whose British parents took him to the Continent, spurring a widely publicized manhunt in 2014, after a British hospital declined to send him to Prague for an experimental radiotherapy. The parents were arrested and brought back to Britain. (In the end, the hospital agreed to allow him to go to Prague for treatment, and he survived.)
An appellate judge, Lord Justice Andrew McFarlane, found that the King case was exceptional because that boy’s parents had put forward a “viable alternative treatment option,” which he said Charlie’s parents had not done. He praised their “composure, focus and dignity,” but upheld Justice Francis’ ruling. Britain’s highest court agreed, as did the European Court of Human Rights, in a judgment on June 27.
At this point, medical and ethical experts say, the few avenues to treatment for Charlie appear to be closed, and it seems to be just a matter of time before his parents accept that there is nothing more to be done.
“The case has gone through the courts, and it is over,” said Claire Fenton-Glynn, a legal scholar at the University of Cambridge who has studied the case. “This is prolonging the agony of a devastating situation.”
Professor Truog, of Harvard Medical School, noted that the United States was generally more individualistic than Britain. As a result, people tend to be more open to the idea of taking heroic — and frequently quite expensive — long-shot measures, making these sorts of “end of life” ethical disputes a familiar aspect of medicine in the United States.
“A family who can’t accept the limits of medicine — whether the parents of a small child or the relatives of an elderly patient — is the No. 1 cause of ethical conflicts today in American hospitals,” he said. “I get two or three cases such as these in my intensive care unit a month. But we usually can get the family to a point where they can accept the inevitable and make the death the least bad.”