The Liverpool toddler died on Saturday after a long struggle with illness. His case became a battleground in which conflicting interests contested over his treatment. Alder Hey Hospital said his condition was untreatable and terminal, and wanted to withdraw his life support. His parents said no. Alder Hey, the judges and the NHS became the targets of savage criticism orchestrated from the US and Italy by 'pro-lifers' convinced a child who could be saved was being euthanised. So what were people saying – and what weren't they hearing?
1. 'Parents' wishes shouldn't be overruled.'
As a general rule, of course. But that can't be the absolute rule, because a child's best interests come first. If a parent is neglecting or mistreating a child (which Alfie's parents were not) or refuses to allow it appropriate medical treatment, the authorities have a duty to act. If Jehovah's Witness parents refuse to allow a blood transfusion, for instance, too bad: the courts will step in.
2. 'Alfie might have got better.'
It's absolutely understandable that his parents wanted to believe so, and social media pictures showed an apparently healthy child. But the court, on the basis of the best medical advice, said: 'Alfie looks like a normal baby, but the unanimous opinion of the doctors who have examined him and the scans of his brain is that almost all of his brain has been destroyed. No one knows why. But that it has happening and is continuing to happen cannot be denied. It means that Alfie cannot breathe, or eat, or drink without sophisticated medical treatment. It also means that there is no hope of his ever getting better.' People who have no access to Alfie's records and no medical knowledge have no right to contest this opinion. There is a wealth of medical detail here.
3. 'His parents should have been allowed to take him to another hospital.'
This, for many, is the nub of the question and the focus of his parents' repeated appeals. If there is any hope at all, shouldn't it be tried?
From another judgment: his parents wanted him to go to a hospital in Rome and then Munich for a tracheostomy and a gastrostomy. This would have allowed him to be treated at home. They said that if there was no improvement after six months they would accept the withdrawal of his life support.
Prof Nikolaus Haas of the Munich hospital admitted there was 'no useful test that may be performed to improve Alfie's condition'. However, he argued that withdrawing life support would 'immediately lead to his death, which certainly cannot be in his interest'.
However, a report from the Bambino Gesu hospital in Italy stressed the risks of transporting him: 'A hypothetical transfer might be done from the patients bed to ambulance, to airport and subsequent ambulance or helicopter to the final destination. It is possible that during the travel Alfie may present continuous seizures due to stimulations related to the transportation and flight; those seizures might induce further damage to brain, being the whole procedure of transportation at risk.'
Dr Haas relied instead on the advice of Dr Matthias Hubner, medical director of Munich's Pediatric Air Ambulance. Hubner had visited Alder Hey posing as a friend of the family and concealing his medical status from doctors. He claimed to have seen Alfie's files, which was not true. He set out a travel plan for Alfie doctors said would have been 'ineffective and inappropriate'. Mr Justice Hayden said: 'I am at a loss to know quite why Dr Hubner fell so far below the standards expected of his profession.'
And, he said: 'The plans to take him to Italy have to be evaluated against this analysis of his needs. There are obvious challenges. Away from the intensive care provided by Alder Hey PICU, Alfie is inevitably more vulnerable, not least to infection. The maintenance of his anticonvulsant regime, which is, in itself, of limited effect, risks being compromised in travel. The journey, self-evidently will be burdensome. Nobody would wish Alfie to die in transit.'
In other words: nobody thought Alfie would get better. There were grave risks involved in transporting him abroad, and nothing to be gained by it except a few more months of life on a ventilator. The judgment was that the kindest and best thing to do was to withdraw treatment.
Critics of Alfie's treatment have, for the most part, not read this judgment and have arguably been driven by emotion and ideology rather than by evidence. If a child is dying, there are no easy choices. However, it is impossible to argue convincingly that the courts or the hospital could have taken a better path than they did.
Follow Mark Woods on Twitter: @RevMarkWoods
