Review: 23 Week Babies – the Price of Life

Picture of Heather Rutherford, a quadriplegic, with a pug she bredBBC2 - 23 Week Babies: The Price of Life

This was on last Wednesday on BBC2, and is available on iPlayer until next Wednesday. It examines whether it is worthwhile to resuscitate babies born at 23 weeks, which is the absolute earliest in the pregnancy a baby can be born and have any chance of surviving. Even then, most die and most of the survivors have severe disabilities. Before that, a birth is regarded as a miscarriage. In some countries (like the Netherlands), babies born then are left to die, while in Sweden, survival (and healthy survival) rates are much higher than they are here. The presenter, Adam Wishart, presents his evidence for the programme here. There was also a debate on ITV’s This Morning programme featuring the presenter and two of the people in the programme, and Wishart also wrote a piece for the Daily Mail.

The programme showed two baby girls, one older girl and one young woman who were born very prematurely; of the two baby girls, one survives for only a few days while the other is taken home by her parents a few weeks later. The young girl, Molly (whose parents have been interviewed by the media this past week), is 11, and has mild cerebral palsy and epilepsy, but is otherwise fairly healthy and is presented as the “exception” to the rule that the vast majority survive only with severe disability. The one that was the most interesting to me was the young woman, Heather Rutherford, whose mother is one of the nurses treating premature babies at one of the hospitals, and who herself was born at 26 weeks gestation, then the limit of viability. She has fairly severe cerebral palsy, and has the use of only one limb (her left arm).

(Note: After writing this article I did a little bit more research and found that the impression given by the programme of Heather having a lonely and inactive life isn’t true — she is an active dog breeder and showed several of her pugs at recent dog shows including Crufts, and is currently at an exhibition in Birmingham. Neither this programme, nor the Daily Mail article, nor the ITV discussion mentioned this activity of hers. However, that is the lot of many severely disabled adults in this country, as I mentioned when I wrote about Hilary Lister back in 2009.)

Heather had a relatively happy childhood and acknowledged that she received excellent support during the time she was at school; her A-level results meant she was accepted for a place at a university to study biomedical sciences, but her disability made the lab work and lectures very difficult and she ended up dropping out. This led to a period of deep depression during which she seriously considered suicide. She also says that most of the support she received as a child disappeared entirely when she reached 18, and that she is terrified of the future, in particular of how she will live once her parents are no longer there to look after her. As the programme made clear, she was experiencing a very difficult transition from being a disabled child to being a disabled adult.

As she makes clear in her interview on ITV (the website is not very reliable and you may find that either a blank page appears or that the Flash video of the interview does not play), she is not against keeping premature babies like herself alive, but believes that there is no point unless those born are supported right into adulthood, not just at the point where they can be presented as miracle babies. The programme did not mention it, but this is something that has been in the news a lot lately, and it is a problem that current government plans are likely to make worse and not better. It is also not the first time I’ve seen a programme on premature babies that made exactly this point: that the quality of the later lives of very premature babies may not justify the effort of making sure they survive (one of those interviewed on that programme was a young man with a drastically impaired memory, although he seemed content with his life and, later on, got a girlfriend and found he could remember events with emotion attached to them). It appeared that the female survivors had better chances, particularly as regard cognitive disabilities, than male ones.

It was quite disturbing that money was continually referred to in this programme — the issue of whether keeping the babies alive was worth the money. The same could be said for any person suffering a severe medical crisis and the prospect of lasting severe disability, whether it be a stroke or a car accident. I do not hear anyone saying that these people should be let go, because it’s not worth the money saving someone who is going to be cognitively impaired and/or quadriplegic anyway. While a large proportion will not survive long after a very premature birth, those who survive “with disabilities” will need lasting support, so that a lavishly cared-for child does not grow into a disabled adult enduring a lonely life of enforced idleness.

Picture source: SnugglePug.

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