High rate of disability in extremely premature babies, new research results reveal

The follow-up results of a major study into babies born extremely prematurely have revealed that a high number of these children have a disability, although the levels of severity vary widely.

The EPICure study, involving academics at The University of Nottingham, is the first in the UK to follow a group of babies born extremely prematurely at the age of 25 or fewer weeks in gestation in 1995 and assess them at two and a half and six years of age.

The two-and-a-half-year assessment, published in 2000, showed that of the 302 surviving babies available for follow-up, 50 per cent had no disabilities, 25 per cent had some level of disability and 25 per cent had severe disability.

This new element of EPICure followed 241 of the surviving children at early school age and assessed them at an average age of six years and four months. Very detailed medical and psychological testing took place and 160 classmates born at full term served as a comparison group rather than using standardized controls, which are based on children assessed in the 1970s.

The results, being published today in the New England Journal of Medicine, indicated that there was a high rate of disability in this group of children. In particular, learning disability could be detected more accurately than at the earlier assessment. The results showed that 20 per cent of the children had no problems, while 22 per cent had severe disability such as severe cerebral palsy (children not walking), very low cognitive scores, blindness or profound deafness. The proportion of children with cerebral palsy with severe or moderate motor disability was 12 per cent and 24 per cent had moderate disability such as cerebral palsy (but walking), IQ/cognitive scores in the special needs range, lesser degrees of visual or hearing impairment. Just over one-third (34 per cent) had milder problems such as wearing glasses, a squint or low/normal cognitive scores.

The study also showed that boys had a greater risk of severe disability and lower scores for cognitive brain function than girls, supporting the concept that male sex is an important biological risk factor in extremely pre-term infants.

Neil Marlow, Professor of Neonatal Medicine in the University’s School of Human Development and joint author of the paper, said: "The strength of this study is its uniqueness and its completeness enabling us to marry up all the data from birth to childhood.

"These results show that the majority of children do not have a serious physical disability, ie do not have cerebral palsy, blindness or deafness and despite the high incidence of learning difficulties, half are doing reasonably well and keeping up with their classmates."

The findings indicate that many extremely premature children and their families require psychological and educational support throughout childhood. This will further inform the debate on the best treatment of babies born at the limits of viability, which is currently taking place in most Western countries.

BLISS, the premature baby charity, in association with the Healthcare Foundation, was a major funder of the study. Rob Williams, Chief Executive of BLISS, said: "This is an important study, the results of which will give some guidance as to the possible outcome for this small group of babies. They may well affect difficult decisions that have to be made on continuing treatment. It is vital to be aware of the potential outcomes of neonatal intensive care on these very small and vulnerable babies, which is why BLISS has been a major funder of EPICure. However, babies born at this early gestation age represent a very small proportion of the 40,000 babies born prematurely and the fact that they survived at all is a tribute to the improved knowledge and continuing dedication of the neonatal team and parents."