Premature Child

Disability – Information taken from the EPICure study

(Published in the New England Journal of Medicine 6th January 2005)

There are two major groups of disabilities that are seen after very premature birth - physical problems that affect the way a child is able to do things, and learning problems.

The first group are those associated with physical problems such as cerebral palsy, blindness or deafness. Although each disability has a different cause and cerebral palsy is the most common these conditions tend to be easy to identify as a child grows up and the problems stay with the child as he or she develops. Cerebral palsy is a very wide group including children who have difficulty walking and with posture and also children with very little problem in day to day life.

In the EPICure Study (babies born at 22-25 weeks of gestation) cerebral palsy occurred in 20% of survivors that we examined. However only half of these children had serious disability and in the rest we judged the disability as mild. Serious hearing and vision problems were much less common (6%).

The next figure shows the proportion of children with physical disabilities (the frequency is similar at each week of gestation):

The second area of disability in ex-premature children is often termed “learning difficulties” or “cognitive impairment”. Again these probably have different causes to physical disabilities but can be difficult to identify at early ages. Such problems become more apparent when the children get to school and are carefully assessed by their teachers.

For some children it is clear much earlier that thee are problems and steps can be taken to try to help the child before he or she goes to school. These difficulties can be quite severe and may be associated with challenging behaviour, in particular attention deficit disorder where a child his difficulty in attending to tasks, is quite easily distractible and sometimes difficult to control.

Learning difficulties are by far the most common disabilities found after extremely premature birth. In the EPICure Study 10% had very severe cognitive problems and a further 31% problems that we think are likely to need extra help at school.

Combining these problems with physical difficulties allows us to calculate the overall disability rates which are shown below. Although disability affects a high proportion of surviving children, it is most important to remember that most of the children in the EPICure study were doing reasonably well at school, keeping up in the classroom and had normal behaviour patterns. This is something that is often not emphasised in discussions.

It is obvious from the Trent Neonatal Survey information at the top of this section that survival has improved – with this the chances of surviving without serious disability have improved a little but as yet we can't really tell you the exact figures as yet.