The parents of a 20-month-old baby suffering from an unidentified degenerative neurological condition have told a British court that they want they want their child to die at home if he cannot be transferred to a Vatican-owned hospital in Rome.
The staff at Alder Hey Children's Hospital in Liverpool have applied to end the life support for Alfie Evans, arguing that any further treatment would be inhumane and futile.
Last week, three experts from the Vatican-owned Bambino Gesù children's hospital visited Alfie and acknowledged the "complete futility" of further treatment finding a cure, but they offered to take the infant to Rome to undergo operations that would allow him to breathe and receive food, keeping him alive for an "undefined period."
The boy's parents — Tom Evans and Kate James — have told the court that they could still see "a life" in their son, despite the terminal prognosis of the doctors.
The judge in the case, Anthony Hayden, had ordered MRI scans of the boy's brain last week, and the results had indicated that his brain had deteriorated even more than had been expected.
But Hayden had reportedly questioned medical evidence after watching an emotional video that was believed to have been provided by Alfie's parents. The clip had featured the boy opening his mouth and yawning in a "natural" manner, but Alder Hey doctors disputed that Alfie could be aware of the yawn and claimed that it could be a part of seizure activity.
"I look at the video of the yawning, and it just seems to be the most spontaneous, natural, pleasurable yawn," Hayden said, as reported by the Mirror.
"It may be very little to go on in terms of evaluating some level of consciousness beyond what the neurological evidence points to, but isn't it nonetheless a real possibility?" he added.
He said that watching the video had caused him "particular difficulty" and has asked Alder Hey doctors for their opinion because he "could not easily reconcile" what he saw of the child with some of their evidence about his condition.
A doctor who has not been named in the case explained that if Alfie was somehow yawning deliberately, he would not be able to feel or experience any pleasure from it, noting that the experience could not be transmitted to the brain because the necessary "relay stations" in the brain had been destroyed.
When the judge asked Tom Evans how they wanted the boy to die if they lost their court case, the father replied, "I want it at home."
"It'd be as a family. It'd be me, Kate and Alfie - the family we started off with. It's what Alfie deserves and would want - to support, comfort and spend time with him. We'd have no doctors, machines or other children around," Tom Evans said, according to Crux.