Babies born after fewer than 26 weeks of pregnancy that survive into childhood are more likely to suffer physical and mental problems, according to a new report.
Modern medicine is now able to save the lives of babies born at barely half the full term of 40 weeks. But the human cost is that a high proportion are growing up with disabilities ranging from being unable to walk, to learning difficulties requiring extra help in school.
In the latest report from the biggest long-term study of extremely premature babies born in 1995, called EPICure, researchers found that at the age of 11, more than two-thirds had academic or behavioural problems requiring extra support in school, including 13 per cent who were in special schools.
This compares with 24 per cent of all schoolchildren across England.
There were 219 children in the study, whose performance was compared with 150 classmates born at full term.
Parents and doctors face agonising choices when babies are born at the limits of viability over how hard to struggle to keep them alive, and when to withdraw care. Many are hoping improvements in neonatal care over the last decade will mean better long-term outcomes for the children. However a follow-up study of babies born in 2006 –EPICure-2, due to be published shortly – is expected to show little improvement.
The issue is fraught with controversy. In the Netherlands, babies born at less than 25 weeks are not offered intensive care under a national policy currently being reviewed. The UK has rejected such an arbitrary ruling, insisting parents must be engaged in the decision, though individual premature baby units operate different policies.
When babies are born premature, parents are relieved if there are no obvious signs of disability. But problems with learning take longer to emerge, yet can have an equally damaging effect on the child's chances of forging an independent life.
Previous reviews in the EPICure study, carried out when the children were two-and-a-half and six, showed almost half (46 per cent) had moderate to severe disability as a result of cerebral palsy, low IQ or blindness and deafness, compared with 1 per cent of babies born at full term. As they age and face greater educational challenges, more subtle effects are emerging affecting more children.
Neil Marlow, professor of neonatal medicine at Nottingham University who led the study, published in Archives of Disease in Childhood, said: "The big challenge is to understand why things go so wrong... Is it care related or is it biologically determined?"
There were 1,289 babies born alive in the UK and Ireland below 26 weeks gestation in 1995, with three-quarters dying soon after birth. The survival of any is thanks to extraordinary efforts of doctors and nurses using modern medical techniques.
Professor Marlow said difficulties faced by the children are likely to increase as they move to secondary school, and face more complex academic studies. One option is to defer entry.
"Evidence from Germany, the Netherlands, Canada and the US shows that when children are held back a year they need less support. That can make things easier for the child and de-stress the educational environment," he said.
Pre-term births in numbers
80,000 Number of premature (pre-37 week) babies born in the UK each year
3,600 Number born at 24-28 weeks
550 Number of babies born under 24 weeks in 2005-06
20% Survival rate of babies born at less than 23 weeks. This rises to 47 per cent at 24 weeks, and 67 per cent at 25 weeks
22,000 The number of pre-term babies that need treatment in intensive care, sometimes for months
The Independent, 12th March 2009