BioEd Online

Only a quarter of babies born after fewer than 26 weeks in the womb make it to childhood. And even those that do survive have just a 20% chance of being free of disability by the time they are six years old, British doctors have revealed.

The results are the latest from EPICure, the first study to follow the health of severely premature babies into early childhood. "We needed to find out what was happening to these children," says Kate Costeloe, a paediatrician at Queen Mary University of London and a principal investigator on the EPICure project.

The researchers compared severely pre-term children with their full-term classmates and found that they were more likely to suffer from a wide range of disabilities, including severe cerebral palsy, learning difficulties, below-average intelligence and problems with vision or hearing.

The EPICure study aims to follow the progress of all the severely premature British and Irish babies that were born between March and December in 1995. Of the 1,289 babies born after fewer than 26 weeks' gestation, only 308 survived into childhood. Of those, 241 were included in the latest analysis.

Although a mere 20% of the group had no disability at all, a further 34% had only mild problems such as poor eyesight, says Neil Marlow of the University of Nottingham, UK, who led the analysis. That means that 54% of the kids have a satisfactory quality of life, he says.

There were other surprises too. For example, it is generally believed that the most common problem associated with severe premature birth is cerebral palsy, Marlow says. But the study found that 76% are free of such coordination problems, and only 4% are severely afflicted with the condition. "Cerebral palsy is not the thing we should worry about most," he says.

More prevalent among the six-year-olds were problems with learning and cognition, the researchers say. Some 72% of severely premature children had impaired intelligence, compared with 14% of their classmates. The researchers report their result in the New England Journal of Medicine¹.

Case by case

Decisions about whether to save the lives of severely premature babies should continue to be made on a case-by-case basis, says Rob Williams of the London-based charity BLISS, which is a sponsor of the EPICure project and campaigns for better neonatal care. The current British approach contrasts with the policy adopted in the Netherlands, in which no effort is made to save babies born before 25 weeks.

But an ability to explain clearly to parents what might happen to their child further down the line will be valuable, Williams says. "The more information parents have, the more they are an active partner in the decision-making process," he says. Despite their low survival rates, particularly at 22 and 23 weeks, "the effort going into keeping these babies alive is well worth it", he argues.

The information could also help doctors learn how to stave off mild disabilities. "Twenty per cent of them have no disability; they're not even short-sighted," points out Williams. "We can learn a lot from these kids. What interventions helped them? What did the parents do after the baby went home?"