LONDON — Alfie Evans does not know it, but he is the subject of a national debate in Britain, international diplomacy and a bitter legal dispute. He is held up as a tragedy, a beacon of hope and an object lesson. And he might not live to turn 2 years old.
The hospital and doctors treating him in Liverpool say that Alfie suffers from a degenerative neurological condition that is certainly fatal, that he is in a semi-vegetative state and that the only humane course of action is to let him die. His parents, supported by the Italian and Polish governments and the pope, are not convinced that he is beyond hope, or even that the doctors understand his condition, and they want to continue his care.
On Wednesday, the British Court of Appeal upheld a ruling that not only approved the withdrawal of care and sustenance, but also prohibited his parents from seeking treatment elsewhere, despite an invitation to take him to a hospital in Rome. The decision is wrenching to the parents, the courts have said, but prolonging Alfie’s life would prolong his suffering, and so it would be contrary to his interests.
The staff of Alder Hey Children’s Hospital took Alfie off a ventilator on Monday, but defying expectations, he kept breathing on his own. The parents’ lawyers from the Christian Legal Centre have said they will continue their appeals.
“For the third day now, there’s been not one single problem with him,” his father, Tom Evans, told reporters outside the hospital on Thursday, insisting that Alfie was not suffering, despite what doctors have said. “It’s not a miracle, it’s a misdiagnosis.”
[Do you think parental feelings or government decision-making should prevail in cases like that of Alfie Evans? Please share your thoughts in the comments.]
Mr. Evans said he had started legal action against three doctors, accusing them of conspiracy to murder.
He and Alfie’s mother, Kate James, met on Thursday with hospital officials to discuss the possibility of taking the infant home.
The painful back-and-forth has been fodder for the British news media for weeks, with much of the coverage sympathetic to the parents. A group of people siding with the parents, called Alfie’s Army, has gathered daily outside Alder Hey, waving signs, cheering and jeering, and hospital officials say they and their employees have been subjected to a torrent of abuse.
The court rulings barring continued medical care may sound jarring to Americans, who are accustomed to the idea that a family has the right to keep a patient alive, even if doctors disagree with the decision. Far more familiar in the United States are the cases in which family members have fought for the right to let their loved ones die.
But in Britain, rulings like those in Alfie’s case date to at least the early 1990s, and there have been more than 20 of them in the past decade, said Dominic Wilkinson, a professor of medical ethics at the University of Oxford.
Last year, as a similar case riveted the country and President Trump weighed in, the courts ruled that life support could be withdrawn from another baby, Charlie Gard, and that his parents could not take him to the United States for experimental treatment. Early this year, the similar case of still another baby, Isaiah Haastrup, drew intense attention.
“It’s important to note that the courts do not always go along with the doctors, and they do sometimes side with the parents,” said Dr. Wilkinson, an expert in newborn intensive care.
“Some people believe that the parents’ views are paramount in every case, or that life should be prolonged at all costs, but British law does not accept either of those views,” he said. “The law of the country is that the child’s best interests are paramount.”
Anti-abortion conservatives in Britain and elsewhere have seized on cases like Charlie’s and Alfie’s. Senator Ted Cruz, a Texas Republican, wrote a series of Twitter posts on Wednesday assailing the court rulings and describing the decision to take Alfie off a ventilator as a grim result of Britain’s socialized medical system — though British officials say that the same legal standards apply to patients with private insurance.
Pope Francis met last week with Mr. Evans, and a children’s hospital run by the Roman Catholic Church in Rome invited Alfie’s family to take him there. On Monday in a Twitter post, the pope expressed his hope that the parents “may be heard and that their desire to seek new forms of treatment may be granted.”
Roman Catholic doctrine allows doctors to withdraw medical care, even food and water, under some circumstances but not others.
The Italian government granted Alfie citizenship, hoping to tip the scales in favor of his traveling to Rome, but the British courts were unmoved.
The Polish government, which portrays itself as fighting for traditional Christian values that are threatened in the West, has attracted attention to the case as well. State television in Poland, an overwhelmingly Catholic country, frequently reports on it, and President Andrzej Duda has weighed in on Twitter.
“Alfie Evans must be saved!” he wrote in English. “Perhaps all that’s needed is some good will on the part of decision makers.”
This week, a hastily built shrine to Alfie sprung up outside the British Consulate in Krakow, Poland. People brought teddy bears and flowers, candles and a single message: Don’t let judges decide his fate.
Alfie was born on May 9, 2016. When he was 7 months old, after suffering seizures, he was admitted to the hospital and has been there ever since. His doctors have been unable to diagnose a specific ailment, but they say that his condition has worsened and will continue to, and that he has been in a semi-vegetative state for more than a year.
He sometimes opens his eyes in response to stimuli, or opens and closes his hands. His parents cite those movements as evidence that he is not as profoundly brain damaged as the doctors contend; the doctors say those are involuntary responses that do not demonstrate consciousness.
“I’m still fighting,” Mr. Evans said, “and so is Alfie.”
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