The case of Neon Roberts, the seven-year-old at the centre of a legal battle over cancer surgery, is desperate on so many levels.
Neon had a brain tumour removed last year. Earlier this month, his mother, Sally Roberts, who was legally opposing the treatment of her boy with radiotherapy, went on the run with Neon, sparking a nationwide manhunt. On Tuesday, faced with evidence of a residual tumour, the Family Division of the High Court ruled that Neon should undergo further, immediate surgery against the wishes of his mother. A ruling on subsequent treatments, including radiotherapy, is expected by the end of the week.
The first, pointless, thought of any parent on reading this sad story is “please, let me never be in this situation”. Speculation over the mental state of Ms Roberts, who wishes to pursue alternative, non-invasive treatment for Neon abroad, is scarcely less helpful. I can think of nothing more deranging than the imminent possibility of a child’s death and I suspect that I would flout any law, skip any border if I sincerely believed it offered their best chance of survival.
Ms Roberts’ sincerity is not in doubt. The judge, Mr Justice Robey, acknowledged that she had thought “long and hard” about her 11th-hour decision to withdraw consent for further surgery on Neon. What must be called into doubt by the case is Roberts’ right to decide her son’s fate.
“Should this be my decision, as his mother?” she said after the ruling. “Of course, it should be. It is a human rights issue.”
The problem with human rights, however, is that we all have them. Sally Roberts has them. Neon’s father – who has given his consent to surgery – has them. Most crucially, it is Neon’s human rights which must be considered and Neon’s chances which must, objectively, be weighed. The suggested surgery carries a 16 to 25 per cent risk of leaving him mute. Without it, his medical team at a leading London hospital believes he will almost certainly die within months.
It is the absolute right of an adult to refuse surgery. A child of seven is not considered legally competent to take such a decision. (We do not know, but I rather hope Neon hasn’t been asked.) Ethics are less clear than the law on this point. We are more used to cases where surgery has been refused on religious grounds, but should a deeply held secular opinion carry less weight, in law or in public morality, than religious conviction? On a purely moral level, these are vexed questions which will not be soon or easily solved. And time is not on Neon’s side.
The judge’s decision will, I hope, give Neon the chance, in years to come, to consider the ethics for himself . In the meantime, the best the rest of us can do is to offer Neon – and his parents –sympathy without judgement and thank whatever we believe in that it is not our hell to go through.