Who can make a decision on the fate of a child?
The tragic case of Alfie Evans pitted the state against his desperate parents. For Cristina Odone, sister of the boy who inspired the film Lorenzo's Oil, it also raised painful memories
It has been the bitterest of fights. On one side, medical and legal experts who declared that they were best placed to decide what was right for their tragic young patient; ranged against them, a mother and father whose devotion to their son was unshakeable, even when they believed that doctors had given up on him.
The plight of Alfie Evans, a 23-month-old suffering from an undiagnosed degenerative brain condition, has reached its tragic conclusion. The end, when it came, was in the quiet early hours of yesterday morning away from the noise and furious argument.
Last Monday, 16 months after Alfie was first admitted to Alder Hey Children's Hospital in Liverpool suffering seizures, a ventilator keeping him alive was switched off, on the advice of doctors who had exhausted all medical avenues. The following day, a UK judge ruled that the best his parents could now hope for was to "explore" the options of removing him from intensive care, either to a ward, a hospice or his home. After six months of acrimonious debate, it was a case of care rather than cure.
Yesterday, at 2.30am, Alfie died, his distraught parents taking to Facebook to announce the sad news. "My gladiator lay down his shield and gained his wings... I love you my guy," wrote his father, Tom Evans. "We are heartbroken," added his mother, Kate James. "Thank you everyone for all your support."
The world has been in thrall to this story. When the European Court of Human Rights refused to intervene, protesters attempted to storm the children's hospital. The Italian ambassador granted Alfie citizenship of Italy in order that, at the request of his parents, he might be taken to a Rome hospital for more palliative care - a wish denied by the UK courts, to ensure Alfie's "comfort, dignity and privacy" were maintained. The Pope had even offered to fly the little boy to the Vatican-linked Bambino Gesu Hospital in an air ambulance.
With their palpable anguish, the young parents' desperate plight caught the public imagination - and mine, forcing me to relive my own family's suffering.
When he was six-years-old, in 1984, my brother Lorenzo was diagnosed with a rare neurological condition that in the space of one summer robbed him of hearing, sight, gait and swallow. The doctors told my parents the same thing they told Alfie's: go home and give up.
Instead, armed with the equivalent of a junior cert in science between them but fuelled with fierce parental love, they pored over archived experiments at the US National Institute of Health for more than a year. Incredibly, they discovered what had eluded the medics - an oil that normalised the chemicals attacking the protective myelin sheath in Lorenzo's brain.
Lorenzo's Oil was born - and by introducing it into his diet, my parents succeeded in stabilising his condition. Their extraordinary achievement was lauded worldwide, and turned into a Hollywood film.
My parents, like Alfie's, were prepared to save their son's life at all costs. It didn't matter that he was severely disabled (until he died, aged 30, Lorenzo lay in bed, immobile, in our sitting room, the focus of our family life). It didn't matter that they had to sacrifice everything else.
I wonder if it would have mattered to them, had they learned that he was suffering. Lorenzo couldn't express himself, though occasionally he would emit anguished cries that had us rushing to his bedside. I remember, once, my stepmother in tears, telling her beloved son to "go" if he could bear it no longer.
My parents lived in America. Had they lived in the UK, I doubt that they would have been allowed to make the same choices. In the UK, the law is clear: that the state should intervene to safeguard the child's best interest. In other words, medics, lawyers, judges can step in to protect a child from his parents. This interventionism had Alfie's mother and father fighting in the courts - and infuriated their supporters, who billed themselves "Alfie's Army".
Ordinary parents, grandparents and even children vented their anger by shouting abuse at hospital staff, even issuing death threats. "Alfie's Army" played dirty; intimidating anyone who dared dissent. It also enlisted some peculiar foot soldiers: American pro-lifers, a law student, a religious campaigner who was described by a judge as "fanatical and deluded", the president of Poland, and Liverpudlians who claimed "Scousers" were, once again, victims of the Establishment.
Social media amplified the chorus. The "Alfie's Army" Facebook page garnered thousands of signatories, while other supporters took to Twitter to demonise the doctors, nurses, and judges involved.
Alfie's parents at first felt buoyed by the outpouring. But last Thursday, Evans - having previously called for three doctors at Alder Hey to be tried for "conspiracy to murder" - called off the "Army", pleading with them to "return to their everyday lives" so the family might build bridges with the medical team.
I hated the self-righteous vehemence of "Alfie's Army". Did they really believe that doctors embarked on medical careers to harm children? But part of me also hates the way that grey, faceless officialdom is undermining the most important relationship of all - parenting. When it comes to their child's well-being, surely parents' decisions should trump the state's?
Mothers and fathers know their children better than anyone else. They have invested more in their child's happiness than any medic with letters after their name.
There have been cases where parents have refused their child life-saving treatments. I can see that the law has to step in to allow doctors to uphold their Hippocratic Oath. It was not to save Alfie's life, however, that doctors asked the UK courts to overrule his parents' wishes - it was to terminate it.
The courts decreed that Alfie could not go on as he was, and that his parents must stop clinging to hope. The authorities took on the role of terminator, rather than protector. They decided when to detach his life-saving ventilator. They decided where Alfie's final days were spent.
That feels uncomfortably close to the Stalinist system, whose apparatchiks would take children away from parents suspected of dissent. In their belief in the sanctity of life, to be fought for at all costs, perhaps Alfie's parents were viewed as dissidents. Their Christian viewpoint clashed with the prevailing secularist mindset: all life, no matter how fragile, is the most precious gift.
Religious principles motivate some parents, not all. But Alfie's tragedy highlighted a dilemma that all parents, regardless of their faith, will feel keenly: where does the ultimate authority over children lie - family or state?
For decades, governments everywhere have shown ambivalence to the family. They view it not as the building block of society, but as an obstacle to economic productivity: all those women who stop work to raise children, expensive maternity and paternity leaves, the working parents who secretly prioritise their time at home...
The government is right. The family provides an alternative identity, code of conduct, and role models. As Alfie's parents have shown, it also provides ideals that may not be conducive to material well-being.
No parent should ever have to face the terrible dilemma that confronted Alfie's mother and father. But if they do, they should be allowed to fight, until they can fight no more. Parenting is to hope against hope - always.