Premature Babies - a Success Story
One of the success stories in modern medicine has been the increasing survival of very premature babies. Over the past decade survival has improved dramatically for babies born at 26 weeks of gestation and above so that now over 80% survive.
Normal pregnancy lasts 40 weeks, but babies may survive from as early as 22 weeks, although at these extremely low gestations (22-24 weeks) most babies are born too immature to survive. As with all advances in care, there is a cost in terms of disability suffered by some children among those that survive.
This is the whole point of EPICure, as it allows us to quantify the outcomes and shows us where we need to target our care.
For parents faced with the prospect of delivering a child before 26 weeks gestation, there has been little information available which describes outcomes from large numbers of children. Thus, until we carried out the first study it had been difficult to give parents accurate information regarding the chances of survival and the possibility of disability or other long term problems amongst survivors. Because care improves, and more babies survive, we hope outcomes also improve but we need to show this as well – hence EPICure2.
Why do we need to study extreme prematurity?
We know that disability increases as gestation at birth gets shorter. Births (and surviving children) at gestations below 27 weeks are relatively uncommon – being less than 1% of all births. Babies born this early need to stay in neonatal units for a long time and their care is very intense and costly. Because the number of extremely premature babies born is so small we need large studies to be accurate in describing their outcomes.
The decision to admit a preterm baby for intensive care is made by doctors after discussion with the parents but until 2000 there were no national guidelines or data on which to build them. Data from EPICure have informed important national initiatives such as the report from the Nuffield Council on Bioethics describing many of the issues surrounding decision making in the period around birth (www.nuffieldbioethics.org). Some of these new guidelines have been based on the results of the EPICure studies (www.bapm-london.org/publications).
The attitude of individual neonatologists and obstetricians may influence the management of different babies. The information on which that management is based needs to be impartial as possible as, on the basis of such decisions, treatments that are thought to be effective may be withheld. Clinicians, healthcare planners and parents need population based data relevant to modern intensive care practices for informed decision making. EPICure has given them this nationally based information, which can be used to help this process.
What are we up to now?
We have several major EPICure projects on the go at present:
Analysis of EPICure2 data – here we are studying the effects that the organisation of neonatal care has on outcomes – size of neonatal services that babies are born in, their staffing and the effects of transfers – all things important to parents and their babies. In this the premature babies charity Bliss are helping us. We have the data but need to reanalyse it in new ways.
EPICure@16 – in this project we are writing to all the 16 year olds and asking their permission to contact them personally in a few years to ask if they continue to help us with our studies as they are such an important group.
EPICure@19 – we are currently planning another assessment at 19 years and are currently applying for funding from the Medical Research Council to do this.
Parents and decisions – we are aware that the one area of the family we know little about is the effect that a birth so early has on the family and we are designing some new studies to start to tease out this important area.