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23rd September

High disability risk for premature babies

A study has shown that forty per cent of premature babies born before 25 weeks' gestation have moderate to severe learning disabilities.

The results of the study were made public on BBC's Panorama programme which had exclusive access to the unpublished Epicure study, the largest study of its kind.

The study, which was part funded by BLISS, the premature baby charity, followed 1,200 babies born alive at less than 26 weeks gestation in Britain and Ireland in 1995. Of these, 314 survived to go home.

In the first phase of the study, performed when the children were two and a half years old, it was revealed that just over 50 per cent had some form of disability, and a quarter had severe disabilities, including cerebral palsy, blindness, deafness and arrested development.

The second phase of the research tested the children's IQs at the age of six. The results showed that 40 per cent of the children had cognitive developemental problems compared to two per cent of a control group of their classmates.

The research also showed that in the extremely premature age group of 23 to 25 weeks, boys were twice as likely as girls to develop cognitive problems as they get older.

A spokesperson from BLISS said that the results of the EPICure study revealed by the Panorama programme are "very important and will certainly contribute to life and death decisions made about the care of extremely premature babies.

"It is vital to be aware of the potential outcomes of neonatal intensive care on these very small and vulnerable babies."

"We are sure that the news that 40 per cent of the extremely premature babies studied had problems in cognitive development will have some impact on decisions made about their care. However, we must also reflect and welcome the news that 60 per cent of the babies were treated successfully and have no problems."

Professor Neil Marlow of the Queens Medical Centre in Nottingham, who is one of the co-authors of the Epicure study, told Panorama that he felt justified in attempting to save the lives of babies born on the margins of viability.

He said, "I justify it on the grounds of some wonderful outcomes that one sees and the knowledge that over time we can envisage ways in which we can improve those outcomes."

But Professor Kate Costeloe, Prof of Paediatrics, at the University of London, who also worked on the study said, "I would hope that people understand that being born early is a very, very serious business, that survival is not high, and that should children survive, their likelihood of having life-long problems - particularly in respect of learning is high. At 23, 24 weeks I have sometimes thought that if these outcomes are as good as they can be, should we be doing this."

However, the spokesperson from BLISS stressed, "Babies born at this very early gestational age represent a very small proportion of the 40,000 babies born prematurely. The majority, nearly 37,000, are born between 28 and 36 weeks gestation and these babies have an extremely high chance of leading a normal, healthy life.

"Each baby born is an individual and the outcome of each pregnancy is individual. It is important therefore that the difficult decisions about intensive care treatment for these fragile and vulnerable babies are made on this basis between the medical team and the parents and is not based on an arbitrarily chosen limit of gestational age."

BLISS have a Parent Support Helpline which is open today between 9am and 5pm for anyone who has been affected by these issues. The FREEPHONE number is 0500 618140 or they can be emailed at parentsupport@bliss.org.uk

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