Category: News
Date: 20.09.2004
Printable version
Forty per
cent of infants were found to have moderate or severe learning disabilities
in the largest ever study of extremely premature babies.
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Panorama has been given exclusive access to the
EPICure study - currently awaiting publication in a leading medical
journal - which follows up all premature babies born alive at less than
26 weeks gestation in Britain and Ireland in 1995.
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The results will be revealed in a Panorama special -
Miracle Baby Grows Up - to be screened on Wednesday 22 September
at 9.00pm on 大象传媒 ONE.
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Researchers tested the children at the age of six for
IQ levels, attention and concentration issues, language abilities and
their ability to understand instructions.
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It is the second phase of the EPICure study which previously
looked at the same children at the age of two and a half and found evidence
of physical disability.
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The latest results show that 40% of the surviving children
had moderate to severe problems in cognitive development at the age
of six, compared to 1% of a control group of their classmates.
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It also found that in the early period 聳 23 to
25 weeks 聳 boys are twice as likely to have cognitive problems
in later life than girls.
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The research raises questions about how far doctors
should go to resuscitate babies born at the limits of viability at less
than 25 weeks gestation.
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The neonatalogists Panorama spoke to said they could
not accept imposing arbitrary limits based on gestational age, such
as those that exist in Holland.
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In 2002 the Dutch adopted a national policy not to
treat babies born at less than 25 weeks gestation apart from very exceptional
cases.
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But doctors in the UK did not rule out being much more
selective about babies born on the cusp of legal viability.
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Professor Kate Costeloe, co-author of the study, says:
"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.
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"At 23, 24 weeks I have sometimes thought that
if these outcomes are as good as they can be, should we be doing this?"
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But co author Prof Neil Marlow of the Queen's Medical
Centre in Nottingham is keen to highlight the other side of the debate.
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He says: "I do... [feel justified in attempting
to save the lives of babies born on the margins of viability] and 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."
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The study showed that 4,004 babies were born in Britain
between 20 and 25 weeks gestation in 1995.
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Just over 1,200 were born alive and 811 were admitted
to a neonatal intensive care unit. Of these 314 survived.
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The first phase revealed that at two and a half years
old half of those studied had some form of disability.
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In a quarter of the children severe disabilities were
identified, including cerebral palsy, blindness, deafness and arrested
development.
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Professor Malcolm Levene, Professor of Paediatrics at
Leeds General Infirmary, is not involved in the study but features in
the programme.
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Based on what he knows about the risk of physical disability
alone, he says: "We are certainly not producing more intact survivors
so I think we have reached the point where we have to ask ourselves
'What is the limit of viability?'.
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"We all agree that it's a grey area somewhere between
22 and 25 weeks and in that grey area we have to act responsibly in
being more cautious about offering intensive care to babies.
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"I think seeing the babies
who come back with severe disability makes you realise that probably
there is an outcome that is worse than death and that may be the baby
is severely disabled requiring an enormous amount of support from both
the family and from outside agencies."
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Professor Levene added: "There is no doubt that
there are some families who have said to me that they wished intensive
care had never been started because their baby, their child, is so severely
disabled."
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However he says that for every family that struggles
with disability there are others who cope well.
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"The best outcome for one family may be different
to another family. The best outcome for one family may be the baby dies.
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"The best outcome for another family may be the
baby who survives to be severely handicapped. Another family wouldn't
be able to accept that.
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"But what we have to do is to ensure families understand
the spectrum of different outcomes," he says.
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Bright Asamany is one of the most severely disabled
of all the children who were born in 1995.
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In this latest study he is described as "functioning
at an extremely low level in all areas of development". He
was classified as having severe physical and learning disabilities.
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Bright was born in his local hospital when his mother
was 24 weeks pregnant. Some weeks after his birth a scan revealed that
he had suffered a brain haemorrhage.
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Today he has severe cerebral palsy and severe epilepsy.
Bright is entirely dependent on his parents for the care he needs 24
hours a day.
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Despite their evident love for Bright when asked by
Panorama what they would do if they had another baby born as early as
Bright, his father Kennedy said: "Turn off the machine, there is
no need to continue."
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The study also revisits Layla Jane Guildford. Despite
developing a life threatening illness just after she was born at two
and a half she was classified as having no disability.
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The latest study shows that at six she has an IQ of
104 and is one of the best performing children in the project.
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Her mother Tina Guildford says: "When people talk
about miracle babies 聳 it's not a clich茅. It's a fact. There
are some miracle babies and Layla Jane is one of them."
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Notes to Editors
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The EPICure study looked at all premature babies born
alive at less than 26 weeks gestation in Britain in 1995.
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