The long term difficulties facing Britain’s “miracle babies” are revealed by a new study following the lives of some of the tiniest infants born in this country.
Researchers have been watching the development of all the children who were born 15 weeks or more early across the UK in the first 10 months of 1995.
Of the 1,289 extremely premature babies who were born alive, only 308 survived to their sixth birthdays. They only survived in the first place thanks to the specialist care they received in neonatal intensive care units.
Many expected neurological problems such as cerebral palsy to be the main problem. Instead the latest assessments show that severe to moderate learning difficulties and attention problems are the most frequent difficulties. In the earliest babies – born after only 22 weeks in the womb - the problems were even more pronounced.
The results of the study are revealed for the first time by Professor Dieter Wolke and colleagues in tonight’s (Weds) BBC Panorama entitled Miracle Baby Grows Up.
Professor Wolke – a visiting professor to Bristol’s Children of the 90s project – will be outlining his research tomorrow to doctors and scientists attending the third Conference of Epidemiological Longitudinal Studies in Europe, which is being held in Bristol.
The research is based on the national EPICure Study group with the study coordinated from the University of Nottingham with Prof. Neil Marlow and has been following all 308 children since birth.
Of those children, 241 underwent formal psychological assessment using standard cognitive, language, phonetic and speech tests, with teachers rating their school achievement.
In cognitive tests - researchers found that 40 per cent of the miracle children fell in the range classified as having moderate to severe learning difficulties. In all areas – boys were twice as likely to be adversely affected as girls.
Professor Wolke says that the report raises important questions about the quality of life enjoyed by the miracle babies.
“One of the success stories in modern medicine has been the increasing survival of very premature babies, some after only 22 weeks in the womb. The technology and the skill of the doctors allows us to save babies earlier and earlier and for some parents to have children they could have never otherwise hoped for.
“But sadly the smallest babies have the most frequent longterm problems.
“We have found that severe prematurity is strongly linked to serious cognitive impairment and attention deficit problems as they reach school age. Thus focussed care needs to continue beyond the neonatal unit when the children grow up”
Panorama was allowed exclusive access to the children and their families who appear in tonight’s programme.
The programme's reporter Sarah Barclay said: "Some parents are grateful to have a child whatever the outcome. However others have said there have been times when they wondered whether it might have been better to allow their babies to die."
The EPICure study was established in 1995 to determine the outcome of survival and rates of disability by following-up children who were born in the United Kingdom and Eire at less than 26 weeks gestational age during a 10 month period in that year.
It is hoped that the study will not only show survival and rates of disability, but will also identify factors in pregancny and at birth which could give an indication as to the long term outcome for the survivors and allow the planning of more efficient longterm support for these children and their families.
Professor Dieter WolkeThe third Conference of Epidemiological Longitudinal Studies in Europe opens on Wednesday in the Wills Memorial Building at the University of Bristol, with 300 delegates from across the world.
ALSPAC The Avon Longitudinal Study of Parents and Children (also known as Children of the 90s) is a unique ongoing research project based in the University of Bristol. It enrolled 14,000 mothers during pregnancy in 1991-2 and has followed most of the children and parents in minute detail ever since.