Alfie Evans dies after life support withdrawn

23-month-old boy at centre of international legal dispute passed away after five days breathing without assistance

The parents of Alfie Evans have said they are “heartbroken” after their son died in the early hours of Saturday morning.

A statement posted on Facebook by Kate James and Thomas Evans said the 23-month-old – who was being treated at Alder Hey Children’s Hospital in Liverpool – died at 2.30am.

The youngster was at the centre of a legal battle over his treatment that touched hearts around the world.

The post on Facebook said: “Our baby boy grew his wings tonight at 2:30 am. We are heart broken. Thankyou everyone for all your support.”

Alfie had been breathing on his own with just supplementary oxygen after having life support withdrawn around 9pm on Monday as part of his move to end of life care.

The previous day a group of 200 supporters who held protests and vigils outside Alder Hey, had tried to storm the hospital after the European Court of Human Rights rejected an application for Alfie to be taken out of the country for treatment.

Mr Evans, 21 and Ms James, 20, had fought to take their son to Italy in the hopes that doctors there could diagnose Alfie’s condition, or prolong his life, though the family’s legal team had made clear they were not expecting a cure.

Despite being granted Italian citizenship on the intervention of the Pope the family’s attempt to take Alfie out of the UK was again blocked by the UK Court of Appeal.

Mr Evans said their lives had been “turned upside down” by the “intense focus” his case had received.

“Our little family along with Alder Hey has become the centre of attention for many people around the world and it has meant we have not been able to live our lives as we would like,” he said.

The fierce public campaign in support of the family also led to doctors,nurses and other people working at Alder Hey being “at the centre of a social media storm”.

Staff condemned the “guerilla tactics” of the so-called Alfie’s Army supporters, which included abuse and threats online, and even suggestions that they would pull the fire alarm and force evacuation of the hospital.

Merseyside Police eventually issued a warning and said it would investigate comments being made about the hospital online.

After accepting that their options had been exhausted, Alfie’s parents sought to build bridges with medical staff and pledged to work alongside doctors to give him “the dignity and comfort” he needed.

He said: “We... thank Alder Hey staff at every level for their dignity and professionalism during what must be an incredibly difficult time for them too.

“Together we recognise the strains (that) recent events have put upon us all and we now wish for privacy for everyone concerned.”

As in the case of Charlie Gard, Alfie’s treatment was seized upon by right wing and pro-life Christian groups in the UK and US who funded legal appeals, though the Court of Appeal said there was a “darker side” to the offers of support.

It has led to false claims that in a system like the NHS the government can decide who lives and dies, however the decision to move to end of life care was made by the medical team and upheld by the courts.

In the medical evidence put before the court, which was not contested by the family, doctors said Alfie is unable to swallow, see, or hear and has “profound developmental delay”.

It adds: “He will never make any developmental progress [motor skills, vision, hearing, social, emotional],” and does not respond to pin prick tests or other uncomfortable stimulation.

Alfie’s condition was not formally diagnosed and this was part of the reason for the fight to keep him on life support, but the judgement was made in part on the basis of scans which showed profound damage to his brain with no prospect of recovery.

In its judgement the Court of Appeal said the parents had received “misleading” legal advice that the should be able to take Alfie out of Alder Hey’s care, and said the Italian medical team had not suggested they had alternative treatment or tests that could help.

It added that it was “wholly wrong” to suggest that the “the parents own views can trump the judicial determination” on Alfie’s best interests, as had been proposed by the parents’ barrister.

A statement released by Alder Hey Children’s hospital on Saturday morning, said: “We wish to express our heartfelt sympathy and condolences to Alfie’s family at this extremely distressing time.

“All of us feel deeply for Alfie, Kate, Tom and his whole family and our thoughts are with them”.

Adding that this had been a “devastating journey” and the family’s privacy should be respected.