Scottish Catholic Observer

Communities across the UK and the wider world were left saddened over the weekend, as a terminally ill toddler, whose story had captured the hearts of thousands across the country, passed away in the early hours of Saturday morning.

Across the media, supporters of Alfie Evans and his parents, 21-year-old Tom Evans and 20-year-old Kate James, were pictured releasing blue and purple balloons towards the sky in Strathfield Park next to Alder Hey Hospital—their tribute to the young boy.

Pope Francis was among the many who paid tribute to ‘little Alfie’ on his passing, writing on Twitter: “I am deeply moved by the death of little Alfie. Today I pray especially for his parents, as God the Faith receives him in his tender embrace.”

The life of Alfie Evans, and the intense legal battles surrounding his treatment, received extensive media coverage both at home and abroad. The 23-month-old tot had been in Alder Hey Children’s Hospital after suffering a seizure at seven months old, with an undiagnosed neurological degenerative disease.

Dr Mary Neal, a law academic at Strathclyde University, explained to the SCO the legal battle surrounding Alfie’s case.

“The legal action concerned a young boy, Alfie Evans, who was being treated at Alder Hey hospital in Liverpool. Although Alfie had no precise diagnosis, specialists believed him to be suffering from a terminal neurodegenerative condition that was ‘most likely’ a mitochondrial disorder,” she said. “Brain scans showed his brain to be severely damaged with no prospect of recovery.

“The hospital went to court arguing that further treatment was not in Alfie’s best interests, and requesting court approval to disconnect his ventilator.

“Alfie’s parents objected to the discontinuation of treatment, and wanted to take their son to be treated at a specialist paediatric hospital in Rome.”

The Italian hospital to which Alfie’s parents wished to have him taken was Rome’s Bambino Gesù Hospital, a specialist children’s hospital that has Vatican links. Mr Evans flew to the Vatican to meet with Pope Francis personally, pleading with him to ‘save our son.’ However, Alfie’s life support was withdrawn on Monday April 23, after his parents lost all legal challenges against the court ruling that allowed for his life support to be turned off.

The little boy was granted Italian citizenship by the Italian Ministry of Foreign Affairs, in hopes that it would allow for ‘immediate transfer to Italy.’ A hearing at the Court of Appeal on Wednesday April 25 saw his parents—and the thousands of supporters, known as Alfie’s Army—wait in hopes that the last-ditch attempt would see the child flown to Italy, but a judge ruled that he would not be allowed to travel abroad.

Many had gathered outside Alder Hey Children’s Hospital to protest at his life support being switched off, with a police presence in place as a result. Following news that Alfie would not be allowed to travel to Italy, Mr Evans thanked supporters, but asked them to ‘return back to your everyday lives’ to allow the family to ‘form a relationship, build a bridge and walk across it’ with the hospital as they ‘work with his treatment team on a plan that provides our boy with the dignity and comfort he needs.’

The little boy went on to survive for a number of days after his life support was withdrawn on Monday April 23, until news of his death devastated the world on the morning of Saturday April 28.

“Our baby boy grew his wings tonight at 2.30am,” Ms James wrote on Facebook. “We are heart broken. Thank you everyone for all your support.”

Archbishop Malcolm McMahon was among those who paid tributes, expressing his ‘deepest sympathy’ to Mr Evans and Ms James.

This week, Cardinal Vincent Nichols of Westminster issued his support for the hospital staff.

“It’s important to remember Alder Hey Hospital cared for Alfie not for two weeks or two months, but for 18 months, consulting with the world’s top specialists —so its doctors’ position that no further medical help could be given was very important,” he said, according to The Tablet.

The case saw many draw parallels with the Charlie Gard case, which saw a young boy whose parent similarly lost the legal fight to have their son taken abroad for treatment last year, also pass away. Charlie’s mother, Connie Yates, told on Facebook of how her and her partner had watched ‘with heavy hearts’ as Alfie’s case went on, and that since their son’s death they had been working ‘with paediatric consultants, medical ethicists, senior lawyers, UK politicians and other parents who have suffered similar situations as us, to try and propose a law that will prevent parents experiencing painful and prolonged conflicts with medical professionals.’

“This involves addressing problems around the ‘best interests’ test as well as creating a platform for transparency and openness so that cases like these can be dealt with before they ever reach the courts,” she said. “We were calling this ‘Charlie’s Law’ whilst also working on the foundation set up in his memory.” Dr Neal told the SCO that there is ‘certainly growing support for at least a review of the law as it stands.’

“In the past few days it has emerged that Charlie Gard’s parents, Connie Yates and Chris Gard, have been working quietly behind the scenes since their son’s death on proposals for a change to the current law,” she said. “It’s not yet clear what the details of their proposals will be. The plight of Alfie Evans and his parents has also led to separate calls for a change in the law. So there is certainly growing support for at least a review of the law as it stands.

“There are legitimate questions to be asked around how the ‘best interests’ test functions in these cases, about whether a ‘significant harm’ threshold (used in other areas of law) would be more appropriate, and general concern about the respective roles of parents and ‘experts’ in making treatment decisions for severely ill children.

“There are also valid questions about whether the present law and the way it is interpreted aligns well enough with public morality.

“Given the distressing cases of Charlie and Alfie the seeming inevitability of more cases like these under the existing law, there is a strong argument for looking at the law in this area and seeing whether and how it might need to be amended.”

Dr Neal said she hoped that were a similar case to take place in Scotland, that NHS Scotland would ‘take the utmost care to respect the family and work with them,’ but added that the courts’ endorsement of the hospitals’ stance in the cases of both Alfie Evans and Charlie Gard might make hospitals ‘bolder in their dealing with families.’

“It’s impossible to say what would happen in a similar case in Scotland,” she said. “The test would be the same—the ‘best interests’ of the child would be paramount in the court’s decision making —so it is perfectly forseeable that a similar course of events could unfold here.

“How NHS Scotland would handle such a case is a good question. I would like to think that in light of the distressing cases in England they would take the utmost care to respect the family and work with them, and not add to the terrible trauma parents endure at a time like this.

“However, the courts’ complete endorsement of the hospitals’ positions in the Gard and Evans cases could make hospitals in future cases (including in Scotland) bolder in their dealings with families, given the overwhelming ­likelihood that courts will endorse doctors’ views of ‘best interests.’”