LEICESTER, United Kingdom – A British judge has ordered that the ventilation from a 21-month-old baby with a rare brain disorder be removed, despite the requests from the parents the child be allowed to leave the country for further treatment.
“My son is two years of age and he’s been sentenced to the death penalty,” the father of Alfie Evans said outside the courtroom. “Nobody, I repeat nobody in this country will take my son away.”
The Vatican-owned Bambino Gesù children’s hospital in Rome is among the hospitals that have offered care for little Alfie.
Doctors from the Bambino Gesù have agreed with British doctors that further treatment would be “complete futility,” but said they could carry out operations which would help young Alfie breathe and receive food, keeping him alive for an “undefined period.”
On Tuesday, the court heard that the most recent scans of Alfie’s brain “confirm a rapidly destructive brain disease,” and that the vast majority of the white matter of the brain has been wiped out.
The child suffers from repeated seizures, which the British doctors say make transporting him unnecessarily painful and dangerous.
A doctor from the Italian hospital testified on Tuesday that Alfie was in a “semi-vegetative state,” but that “movement, light, and sound” do provoke reactions in Alfie. He said palliative care should be offered to the child.
The child’s parents – 21-year-old Tom Evans and 20-year-old Kate James – have been fighting the decision of Liverpool’s Alder Hey children’s hospital to remove Alfie’s child support.
The case is drawing comparisons to that of Charlie Gard, the 11-month-old infant who died from a rare disease after a legal fight last summer.
In the Gard case, the Bambino Gesù had offered to treat the child over the objections of a London hospital. Pope Francis became interested in the case and expressed his hope that the desire of Gard’s parents “to accompany and care for their own child to the end” would be respected.
In the end, Gard’s parents dropped their court case, and he died on July 28.
Although Francis has not personally commented on the Evans case, some of his writings on end-of-life care were submitted to the court.
The parents have told the court they are Catholic.
The judge in the case, Anthony Hayden, said the court has decided continued ventilation is no longer in Alfie’s best interests.
“This decision I appreciate will be devastating news to Alfie’s parents,” Hayden said.
“What Alfie needs now is good quality palliative care which will keep him as comfortable as possible while sustaining his life,” the judge continued. “He requires peace, quiet, stability, so that he may conclude his life as he has lived it.”
According to the Anscombe Bioethics Centre, an Oxford-based Catholic academic institute, the “fundamental ethical principles involved” in the Gard and Evans cases are “very similar.”
“Doctors should not be forced to continue treatment if they believe it offers little or no benefit relative to the burdens it entails, nor should they be forced to refer for specific treatments that they do not believe to be in the best interests of their patient,” a Feb. 2 statement from the institute said.
“On the other hand, doctors should not prevent competent patients from seeking, for example, life-sustaining or palliative care or treatment from another doctor. Indeed, patients have a right to a second medical opinion and a general right to seek alternative treatment.”
While giving his decision, Hayden said “life itself has intrinsic value” and added he was “extremely grateful” to Evans and his family for the very respectful and dignified way they have listened to the judgement.
“I am very much aware that Alfie’s parents are Roman Catholics and brought up in this tradition, although they do not present as devout,” the judge said. “In his closing remarks, Alfie’s father said Alfie is ‘our child, and a child of God,’ and it is important that these factors are considered.”
Like Charlie Gard, Alfie Evans has captivated the country. British celebrities like Jamie Lomas, Dennis Wise and Rebekah Vardy – wife of Premier League soccer star, Jamie Vardy – have been vocal in their support of the parents’ position.
Members of “Alfie’s Army” have been active on social media and gathered outside the courtroom on Tuesday.
Alfie’s ventilation could be removed as early as Friday if the Evans family do not appeal the decision.