23 WEEK BABIES: THE PRICE OF LIFE
Many will have seen the BBC2 documentary on Wednesday 9 March. After the programme I was contacted by Adam Wishart who made the documentary as I had questioned the accuracy of the figure quoted in the programme of 1-in-100 babies surviving at 23 weeks, as being out of date. It is frustrating that we have not yet published the data from EPICure 2 for children born in 2006. I responded to his questions on his blog and below is my answer posted there. I hope that it is clear that interpreting data about survival is really tricky and nowhere is this more difficult than at these very low gestations.
"Thank you for giving us your sources: they are somewhat out of date and don't precisely give the correct prognosis. It would have been helpful to have perhaps discussed these issues before moving on to repeatedly reiterate them during the programme. As neonatologists we have to deal in these data everyday and how they are presented and interpreted will drive the discussion. It also doesn't help to describe attempts to stabilise babies in such emotive terms.
"Bill Silverman prefaced an article about our early report with the quotation "is the glass half empty or half full – it depends whether you are drinking or pouring". It seems you have taken up one stance. It doesn't help to quote data from areas where many of the babies were not actively intervened with (in Charles' response above).
"It is true that in 1995 we reported as you quote but we need to ascertain which babies had active intervention which was not really available in the EPICure study and the 1 in 100 statistic misinterprets mild disability – which refers to minor visual impairments and mildly depressed developmental scores which I don't think we should be using as reasons for writing off children. The key statistic is of those babies admitted to NICU of whom 6 in 100 survive without serious disability.
"When we went back in 2006 we found no significant increase in survival, but survival had increased to 20% (see our website), we know that active intervention only occurred in about 85% and we know that survival is much higher in large perinatal units (by over 80%) - making your pessimistic assessment somewhat out of date. These data have been presented widely to professional groups. This reflects the fact that intervention is much more likely at this gestation whereas in 1995 it was much less likely to occur.
"I cant give you chapter and verse on outcomes as we are still analysing those data but at 3 years it doesn't look as if the outcome is any worse for survivors. The hospital based outcomes for my present hospital were published a couple of years ago showing close to survival rates reported by the Swedes in the Express Study which would fit with increased survival at level 3 Neonatal Intensive care Units (given the imprecision of small numbers from one hospital). Clearly if 1-in-5 is surviving without serious disability (as seems to be happening in some centres) then your report is completely inaccurate in this area. The factors which influence outcome will very much depend upon the surroundings in which the child was born; we use the 1 in 100 statistic to refer to babies at 22 weeks, and will not intervene unless pushed very hard as I agree totally with the documentary that this would be unacceptable.
"The points you make about family support and support for adults were however very well made and I can support wholeheartedly; if we are to improve the outcomes at the advancing edge of gestations at which survival is increasing then such support is mandatory and it is a scandal that it does not occur! Of course very many more children have disability from conditions other than prematurity and find it equally hard to access services - that is a much more relevant statistic, a national shame and scandal, than for the very few sub 24 week babies that have problems.
"The challenge for modern medicine is to reduce the impairment rate by understanding which factors lead to them and intervening to stop them. That the Dutch would not have bowed to pressure and changed their policy if we were not doing this, is somewhat more relevant than the fact they wont resuscitate at 23 weeks, than was given credit for.
"I think as society we still have to get this area right. In the 80's it was babies The EPICure team are working hard to get the papers out as soon as possible so the full data can be explored.
Neil Marlow 10 March 2011