One of the largest studies to examine disability rates among extremely premature babies has found that just under half grow up with some form of neurological or developmental disability. Severe forms of disability were present in 23% of babies born at 22-25 weeks, and boys were more likely to be disabled than girls.
The findings provide the clearest indicators to date of the chances of these babies having a disability and will help inform both parents and health professionals of the risks faced by such children. The results are based on a study that assessed the development at 30 months of all very premature babies born in the United Kingdom and Republic of Ireland over 10 months in 1995. The study, reported in the New England Journal of Medicine (2000;343:378-84), found that the most likely outcome of premature birth before 26 weeks is death. Of 811 infants admitted to neonatal intensive care units, only 314 survived and were subsequently discharged home.
Researchers at Nottingham, London, Sheffield, and Oxford carried out assessments of 283 of these children at around 30 months to determine levels of disability. They found that 49% of the children had some form of disability, most commonly problems including non-fluent gait, some difficulty with feeding with both hands, impaired sight and hearing, and delays in talking. Just under a quarter of the children met the criteria for severe disability, which included being unable to walk without help, unable to feed themselves, being blind, or being unable to talk.
Boys were more likely than girls to experience problems with both mental and psychomotor development, but the risk of disability was no greater for babies born at 22 weeks than at 25. An accompanying editorial (pp 429-30) said that the study will help to define “the limits of hope for parents who are confronted with extreme premature birth.”
It added that the study highlights the importance of individual families making decisions about premature infants, rather than have courts and insurance companies issuing rulings designed to fit all situations. “This individualised approach permits interpretation of the meaning of scientific progress by each family,” it said. “Understanding the richness and resilience embodied in parental coping strategies might improve outcomes for both families and infants as much as the technological advances of the 1990s.”
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PENNY TWEEDIE/SCIENCE PHOTO LIBRARY
A premature infant born at 24 weeks, almost concealed by tubes and sensors
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Range of ability found in premature babies in a recent study