Dani Garavelli: Not always a case of mother knows best

It cannot be easy to accept that a child, who has already endured so much, must undergo another round of gruelling treatment; or to relinquish responsibility for his care to doctors whose superior expertise leaves you feeling redundant. With so much at stake, and with parents believing they are best-placed to know what is in their child’s best interest, it’s hardly surprising that the relationship with the hospital sometimes breaks down.

In the past, disputes over the medical treatment of children have tended to involve the parents demanding more – rather than less – intervention. In 2009, a couple fought to stop a hospital withdrawing treatment from their terminally ill baby. Eventually, the High Court ruled in the hospital’s favour and the child was allowed to die. But who could condemn the parents for wanting to keep their baby with them at all costs, especially after the court was shown footage of him sucking his mother’s finger as she stroked his head?

But neither is it unheard of for parents to fight for the right to refuse treatment. Two years earlier, Kirsty and Andrew Jones supported their daughter Hannah, 13, in her battle to be allowed to turn down a heart transplant. Hannah, who had been in and out of hospital for nine years, said she couldn’t face any more operations and won the right to spend whatever time she had left at home.

Sally was determined to prevent doctors from carrying out an operation to remove a residual piece of previously excised tumour from Neon’s brain – the go-ahead for which was given earlier last week – and from treating him with a combination of chemo and radiotherapy as she was fearful about the possible side-effects, which can include reduced IQ, reduced height and loss of fertility. Believing these orthodox treatments to be out of date, and medics to be “indoctrinated”, she wanted the opportunity to pursue alternative therapies she had found on the internet.

My initial sympathy – already slightly frayed by Sally’s preference for Google over expert opinion – began to disintegrate, however, when I heard the odds she had been given for Neon’s survival. Unlike Hannah, who was told her transplant was risky and would not necessarily work, Neon’s prognosis is really very good. Given the “gold standard” treatment doctors were recommending, he stood an 80 per cent chance of making a full recovery. His father Ben was on board. But delays caused by his mother’s opposition meant those odds were reducing all the time.

It has to be said Sally is not the most immediately likeable of characters. Her almost self-satisfied demeanour as she arrived at court did nothing to dispel the scepticism over her motives generated by the revelation she had signed a deal with a national newspaper. But thinking of how women involved in traumas – Lindy Chamberlain, Joanne Lees, Kate McCann – are often condemned for their refusal to conform to the public’s stereotype of how a victim should behave, I did try to withhold judgment.

It is not particularly unusual, after all, for people to be wary of what they perceive as the over-medicalisation of society. For many, this involves concerns over the labelling and treatment of normal human reactions or the overdiagnosis of conditions. At the extreme end of the spectrum, however, there is scepticism over orthodox cancer care. Former GP and conspiracy theorist Vernon Coleman has written much about the inadequacies of conventional treatments, insisting doctors often embark on treatment programmes with no idea whether or not they will work. No wonder people question their efficacy.

But, as the case continued, it became clear Sally was wilfully dismissing scientific evidence in favour of theories which had no track record at all. She may have dismissed the image of herself as a “bonkers” mum, but, as she sought a second opinion, only to dismiss it when it was the same as the first, I couldn’t help wondering what she was trying to achieve. This wasn’t a complex case, it was clear-cut. Neon’s urgent need for radiotherapy over-rode any concerns over the possible side-effects of the drugs. Or as the judge, Mr Justice Bovey, said: “You cannot enjoy quality of life if you are not alive.”

The most charitable interpretation of Sally’s behaviour is the one he put on it: that she is in denial. Not everyone is able to accept the truth. After changing her mind and having the heart transplant she rejected, Hannah explained that after winning her case, she didn’t really believe she was going to die. “In my mind, I thought I was going home to get better,” she said “I tried not to think about the alternative. It was such a relief to get away from doctors trying this drug, that drug, this needle, that needle and bright lights and screaming in the middle of the night.”

Perhaps Sally is unable to come to terms with the severity of Neon’s condition. Perhaps all the trawling through the internet in search of other “cures” was her attempt to regain some sort of control. Still, it’s hard to understand why anyone would fight to stop their child having life-saving treatment, regardless of the possible side-effects, when so many other, less fortunate parents, would give anything for a better prognosis on any terms.

Even now the court has ruled in the hospital’s favour – and Neon is living with his father – there is no sign of Sally’s self-belief waning. Speaking after the hearing, she pledged to appeal and to sue the hospital and Ben if Neon is left with any side-effects.

Thanks to the court, his treatment will now go ahead. With any luck – and despite his odds having gone down to 67 per cent – he will recover without any enduring impact on his quality of life. Even then, though, he may have emotional issues to deal with. However well-intentioned she is, Sally will struggle to explain adequately to her son why – when everyone else was fighting to secure his survival – she did everything she could to stand in their way. «

Twitter: @DaniGaravelli1