Television should have times when it is uncomfortable viewing. There should be programmes and moments that challenge us and demand that we reevaluate our most firmly held beliefs. Last night on BBC2 Adam Wishart’s 23 Week Babies: The Price of Life was that programme. My conviction that not only my own son – born just past viability at 24 weeks and doing very well now thank you – but any that emerge the week before deserve the chance of life is not shared by Wishart and this documentary, although not flagwavingly partisan to his idea, explained why.
I’ll leave it to others to challenge Wishart’s statistics. His 9 out of 100 23-week babies surviving doesn’t seem to fit with accepted statistics. Bliss, the premature baby charity, has it at 18 out of 100. Of Wishart’s 9 he says only 1 will not be disabled. When my eldest was on his way into the world we warned that disability was highly likely – we were then told that for recording purposes that disability included the need to wear glasses. And that’s actually before we get to whether being disabled is actually such a terrible thing that we best not switch the support machines on in the first place. The truth about numbers and outcomes may be hard to find but the unchallenged narration (by Wishart himself) didn’t match the evidence he presented in the film – where one in three of the 23 weekers made it home. “The only one I saw in six months” he intoned. But given how few are born nationally one in six months from a single hospital might actually be a reasonable expectation.
There were a few other strands woven in. The overall cost was one. For this we had a bean counter explain that she couldn’t cut expenditure on keeping babies alive without any outcry. Well, fancy. The figure given was £10m. Which sounds a lot but is probably up there the NHS spends on putting air freshener in its consultants waiting rooms. There won’t be a cure found for cancer because funding for neo natal care is cut. (I also missed whether it was explained if this figure was for 23 weeks in Birmingham or for all neo natal care nationally, or a point in between).
Another theme – this one more justifiable – was the lack of support given premature babies, and disabled children and adults more generally – after they leave hospital. It takes a lot of banging at doors and asking questions of care providers – alongside tears, frustration and occasional acts of kindness. Very often it helps if you have the means to go private. And it really shouldn’t. The frustration of the therapist working with older children was understandable, and her wider point about funding for unsexy causes one that should be shouted from the rooftops, but using her as the voice explaining just how damn costly premature babies are – rather than an actual neonatologist – betrayed Wishart’s agenda.
We also had a detour to civilised Holland where they give only palliative care to any child born before 24 weeks gestation. Given the size and difficulties the babies face the duration of this palliative care can be measured in minutes. It’s very supportive and I wouldn’t disagree that it’s well meant and delivered expertly and compassionately. I just hope they have perfect scans in the Netherlands. I know so many people whose dates haven’t been 100% guaranteed – and with my eldest son mentioned above they lopped a week off his gestation after he’d arrived. The machine had been wrong. Such a mistake if it were showing 23+6 rather than 24+6 would be the difference between palliative and intensive care in a Dutch hospital.
Much was made of the issues facing parents and seeing how they struggled with being told what the chances were and what decisions they would face. It brought back memories of similar rooms, similar meetings. But the idea that decisions should be best left to doctors and accountants sits uneasily with me. They are hard decisions. Nobody wants to ever have to make them. But to take them out of parents’ hands is to further deny them the ‘normal’ parenthood that their unplanned and unexpected excursion into the neo natal unit has, at best, delayed.
I’ll ignore quite why the documentary dwelled on why prems come disproportionately from poor people and also why it was felt necessary to tell us that one of the fathers had five children with different women already. I can’t ignore the intrusive camera work which at times went beyond invasive and into insulting. You might think a 23 week baby is little more than a foetus but that is someone’s child and filming their eyes whilst they are dying of heart failure is not a nice thing to do. And then there’s zooming in on a grieving mother’s tears – straight out of insensitive journalism 101.
None of which is to say that this programme shouldn’t have been made or that it’s wrong to debate the rights and wrongs of when and in what circumstances care should be provided. Wishart did well to remove unnecessary emotion from the narration but ultimately it was hard not to feel that Wishart really had made up his mind before he even started filming. In his final comments he said that nobody would deny baby Mathilda the right to life – born at 23 weeks and coming home to loving, relieved parents – and then in the very next line he said that he has come round to believing that the Dutch model is best.
That model would see Mathilda receiving tender, loving care for the minutes she was able to breathe. I don’t exactly see that as the hallmark of a modern society.