LEICESTER, United Kingdom – The parents of a 20-month-old baby with a rare brain disorder have told a British court they want their baby to die at home if he is not allowed to be transferred to a Vatican-owned children’s hospital in Rome.
Alfie Evans is in a “semi-vegetative state,” and he also has an unidentified degenerative neurological condition.
Alder Hey Children’s Hospital in Liverpool is arguing that the child’s life support should be turned off, and any further treatment would be inhumane and futile.
Last week, three experts from the Vatican-owned Bambino Gesù children’s hospital visited Evans in Liverpool and agreed with the British doctors in the “complete futility” of further treatment finding a cure.
However, they offered to take the child to Rome to undergo operations which would help him breathe and receive food, keeping him alive for an “undefined period.”
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.
Alfie’s parents – Tom Evans and Kate James – told the Liverpool court on Wednesday he could still see “a life” in his son, despite his doctors’ terminal prognosis.
The judge in the case, Anthony Hayden, on Friday ordered new brain scans to be taken, and they showed Alfie’s brain had deteriorated even more than had been expected.
Doctors on Wednesday testified that removing mucus from his lungs could cause the child to have seizures and warned that any attempt to transport him to Italy could lead to his death.
Hayden asked Evans how he and James wanted Alfie to die if they lost their court case.
After clarifying he would only accept it if there was no chance for a cure, Alfie’s father said, “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,” he said.
When asked by the judge for his religious views, Evans said he was a Catholic.
“When I pray, I do question who I am praying to, and the belief I have got. Something comes to me and says I’m doing the right thing. It’s an idea of where I stand,” the young father said.
During the hearing, Hayden said “there’s not a single person in the room who wouldn’t want a miracle,” before adding “we’ve got to deal with what we’ve got.”
When the judge asked Evans how long they should wait, he replied, “Alfie decides that. No one has the right to take a life from anyone.”
According to the Anscombe Bioethics Centre, an Oxford-based Catholic academic institute, “doctors should not prevent competent patients from seeking, for example, life-sustaining or palliative care or treatment from another doctor.”
In a statement on the case released Feb. 2, the Institute said, “Parental rights, which exist for the sake of the child in the first instance, should not be taken from parents unless they have been shown to have acted unreasonably and put their child at significant risk.”
The family has received overwhelming support on social media. Over 47,000 people have liked the “Alfie’s Army” Facebook page, and more than 3,000 people have signed a petition on Change.org backing the parents.
“Alfie has shown us what we’re doing is right because he’s still here fighting,” Evans told the court on Wednesday. “He’s led his own battle over the last 14 months. We just want to stop his fits and spend more time with him.”