LIVERPOOL — Alfie Evans, the 23-month-old boy whose parents fought in court to transfer him to another hospital for experimental treatment, has died.
“Our baby boy grew his wings tonight at 2:30 a.m. We are heartbroken. Thank you everyone for all your support,” wrote mother Kate James on Saturday.
“My gladiator lay down his shield and gained his wings at 02:30. Absolutely heartbroken. I LOVE YOU MY GUY,” also lamented father Thomas Evans.
As previously reported, Alfie was removed from life support on Monday evening, but had been breathing on his own for several days. Artificial ventilation was discontinued as all efforts in the courts to save his life were unsuccessful.
Justice Anthony Hayden ruled in February that while Alfie’s plight was “profoundly unfair,” he agreed with Alder Hey Children’s Hospital that treatment measures would be futile, and that the nearly two-year-old boy rather needs “good quality palliative care.” A court of appeals upheld the ruling last month.
Earlier this month, Hayden ordered the end-of-life plan to proceed, stating that while he understands the frustration of Alfie’s parents, he sees no chance of recovery and believes that Evans is hoping for an “entirely unrealistic solution.”
“On February 20, I gave a conclusion after six days of evidence after which Mr. Evans cross examined doctors with conspicuous skill and manifest sincerity,” he said. “But I came to the conclusion at the end of that hearing that Alfie’s brain had been so corrupted by mitochondrial disease that his life was futile.”
“By the time I came to conclude the case the terrible reality is that almost the entirety of Alfie’s brain had been eroded, leaving only water and spinal fluid,” Hayden stated. “Even at the end of February, the connective pathways within the brain had been obliterated. They were no longer even identifiable.”
As previously reported, Alfie, who was six months old at the time, was admitted to Alder Hey in December 2016 due to a chest infection. The child was born healthy by all indications, but began exhibiting unusual jerking movements months later.
While hospitalized, Alfie struggled to breathe due to a myoclonic jerking spasm, and was placed on life support. In January 2016, it was thought that Alfie would not make it, but he overcame the infection for a time and began to improve. However, the infant had to be intubated again after contracting another infection, and was stated to be in a semi-vegetative state.
In court proceedings, Alder Hey officials testified that they believed that Alfie’s brain was “entirely beyond recovery” and 70 percent damaged. They argued that it was in the child’s “best interests” to be withdrawn from life support.
However, Alfie’s parents wanted the boy to be transferred to another hospital to obtain experimental treatment—giving their son one more chance. They stated that they did not know specifically what was wrong with Alfie other than that he had a degenerative neurological condition.
Evans and James had also recorded their son opening his eyes, yawning and stretching, and believed it was evidence that they shouldn’t give up just yet.
The matter gained global attention, and a number of political leaders and other notable voices worldwide soon publicly backed the parents. Passionate supporters also gathered outside of Alder Hey Children’s Hospital to demand that the parents’ rights to their child’s treatment be respected. A helicopter was stated to be on standby to transport the boy to Italy.
On Thursday, after appeal efforts were again unsuccessful, Evans and James released a statement asking supporters to “return to their everyday lives” as they sought to “build a bridge” with the hospital. They had hoped that if matters settled down, they might be able to take their son home to obtain medical care there.
“In Alfie’s interests, we will work with his treating team on a plan that provides our boy with the dignity and comfort he needs,” the statement said.
The child died less than two days later.