EPICure at One Year

Between March and December 1995, details of all births up to 25 weeks and 6 days gestation were recorded, data collection was continued for a further two months in three NHS regions to ensure that there was no seasonal variation, which was not present.

All 276 Neonatal Units in UK and Ireland provided data on babies admitted for Neontal Intensive Care. Identifying information was collected on 314 survivors so that these infants and their parents could be contacted for a formal assessment of health status at a later stage.

At one year corrected age , the local paediatrician was asked to tell us how each child was progressing, so we could keep in contact with the families of all the children.  

Survival

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Of the 4004 births between 20 weeks and 25 weeks and 6 days, 811 infants were admitted to an Intensive Care Unit and 314 survived to discharge home (39%).

Survival at each week, after birth up to discharge is shown below. The risk of death was greatest in the first week after birth. Initial survival rates over the first 7 days were:

At 25 weeks 75%
24 weeks 60%
< 24 weeks 45%

Was there any difference between large and small centres? 

The major centres for Neonatal Care around the UK (i.e. those that care for large numbers of premature babies) did not show increased survival rates compared to smaller centres.

However, units in the UK are small compared to centres in Australia and in America. It is unclear whether survival and quality of survival would be improved by fewer larger centres caring for this group of infants.  

Neonatal Problems in Survivors

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Of the 314 infants discharged home, 62% had one or more of the following problems when they reached the equivalent of term (40 weeks):

  • Cerebral parenchymal cysts (small 'holes' within the brain structure)
  • Hydrocephalus (too much fluid / obstruction to fluid drainage within the brain)
  • Retinopathy of Prematurity (problems at the back of the eye requiring treatment to preserve vision)
  • Continuing need for oxygen treatment 

These problems are shown on the graph:

Disability at One Year

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The results from the questionnaires completed by local paediatricians show that there were continuing medical problems for a proportion of the children at one year of age. 95 (31%) of the children had significant problems in areas such as development, neurology and need for oxygen. 40 children had two or more of these disabilities, as shown in the diagram:

Summary

For the first time we knew what had happened to babies born extremely prematurely in the UK and Ireland. We knew about their survival and chances of continuing significant problems over the first year.

Knowing this, it was important to go on and find out how these problems translated into serious problems at pre-school age. To do this we traced and examined the children at 2.5 years of age.