Premature babies face higher risk of disability

Last updated at 10:22 06 January 2005

Babies born extremely prematurely face much higher rates of disability and learning difficulties compared to full-term infants, researchers have found.

The EPICure study, which has followed UK babies born under 26 weeks gestation since 1995, found that 80% had some form of impairment, in many cases mild but with some children suffering cerebral palsy and blindness.

The researchers found that very premature babies were around twice as likely to suffer mild problems, such as low IQ or a squint, than their classmates.

Quality of life

Premature boys were two-and-a-half times more likely to suffer moderate and severe disabilities compared to girls born under 26 weeks.

The researchers said the study, published in the New England Journal of Medicine, would help doctors in the information they give to patients experiencing a premature birth about what they could expect.

Advances in medical technology have meant increasing numbers of babies born on the brink of viability are surviving.

Many critics have questioned to what extent doctors should fight nature in helping these babies survive, especially when many suffer severe disabilities which affect their quality of life.

Kate Costeloe, a professor of paediatrics at Queen Mary University of London, said there was very little data available on what happened to extremely premature babies.

"We decided that we needed to essentially study what was happening in the UK and find out what has happening to the children we were looking after," she said.

Increased rates of disability

The EPICure study involved more than 1,200 babies born under 26 weeks gestation in 1995, of which only 314 survived to leave hospital.

In the first set of results involving 302 surviving babies at the age of two-and-a-half, 50% were found to have no disabilities, while 25% had some level of disability and 25% had severe disability.

The latest results, assessing 241 children at around six-and-a-half, found rates of disability had increased, mainly because more effective IQ tests were possible at this age.

Only 20% of the children had no problems at all, while 34% had mild disabilities such as wearing glasses or low IQ scores.

More than a fifth (22%) had a severe disability such as cerebral palsy, very low IQ scores, blindness or profound deafness.

A further 24% had moderate disability, such as milder cerebral palsy, special learning needs and visual and hearing impairment.

The figures also revealed that more than 35% of extremely premature boys had moderate to severe disabilities, making them 2.4 times more likely than girls to experience a bad outcome.

'High rates of problems'

The researchers also compared the premature youngsters with a 160 of their classmates.

While 18% of the comparison group were found to have a mild disability, including low IQ or visual problems, this almost doubled to 34% among those born extremely prematurely.

Lead author Neil Marlow, professor of neonatal medicine at the University of Nottingham, said that in the general population under 1% would be expected to suffer a moderate to severe disability, which rose to 22% among the extremely premature group.

"This is a group that has very high rates of problems," he said.

But Professor Marlow said it was important to point out that many children had only mild disabilities which did not severely affect their quality of life.

"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," he said.

Professor Marlow said it was not clear why very premature boys did so much worse than girls.

"It may be there are differences between rates of maturation between girls and boys in the womb.

"The organs of girls may be more mature than boys when they are born," he said.

The figures also revealed wide differences between babies born at 25 weeks and those born earlier.

At 22 weeks gestation, the majority of babies died, with only 0.7% surviving with a good outcome, rising to 9% at 24 weeks and 20% at 25 weeks.

Boosting survival rates

Professor Costeloe said data suggested that giving steroids to the mother before birth had helped boost the survival rates of babies born very early.

The Netherlands has a national policy not to treat babies born at less than 25 weeks gestation.

But the researchers said they would not agree with such a policy being introduced in the UK.

Rob Williams, chief executive of premature baby charity Bliss, which sponsored the research, said: "Here, a large number of babies who would go on to have a very full quality of life would not make it under the Dutch policy."

Mr Williams said the EPICure study went a long way to explaining what parents might expect from doing everything in their power to help very premature babies survive.

"There are people who have said why are we putting so much effort into these premature babies when the quality of life they might expect and outcomes may be very poor.

"But more than half do not have severe impairments."

Mr Williams added: "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."

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