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Last Updated: Wednesday, 22 September, 2004, 17:42 GMT 18:42 UK
The debate: Dr Neil Marlow

Dr Neil Marlow
Dr Neil Marlow

Dr Neil Marlow is one of the co-authors of the EPICure study, which has monitored the progress of extremely premature babies born between March and December 1995.

The study was started because we really did not have a clue what the disability rate was among these very tiny babies.

It was also very important scientifically to understand the origin of disabilities and of cognitive impairments resulting from short gestation.

Only then would we be able to deliver strategies which are actually going to improve likely outcomes.

Medical decision making in this area is often not black and white and the public at large needs to understand that.

There are areas of outcome which are very difficult to factor in to life and death decisions that have to be made around the time of birth.

Context

Most of us have been asking questions about the use of intensive care and how far we should go for these small babies
I am concerned that the message may go out that this is all a disaster area.

But actually for the children and the families it often is not a disaster area. That is a very important thing to stress.

For some parents there is a very satisfactory outcome and it is obviously very important that parents' needs and wishes and thoughts are taken into account in any decision making process.

I have seen some absolutely wonderful outcomes and I can envisage ways in which we can improve those outcomes.

But we have to have a research base now to be able to implement those changes. We need to identify those particular factors with which we have got to make progress.

Overseas experience

I hope and pray that the debate carries on
Doctors in many countries have a much more black and white approach to deciding on commencing intensive care. That is the view that their society has taken.

I do not get the feeling that society in the UK is ready at the moment for that kind of global sort of rules within medical decision making that seems to work very well in other societies.

However, I do think it is always time to ask questions. Most of us have been asking questions about the use of intensive care and how far we should go for these small babies.

I hope and pray that the debate carries on. I think people need to be aware that we are continuously assessing and revaluating what we are doing.

It does not necessarily mean that we should stop at the moment.

Looking ahead

But at some point in the future we might weigh up the balance and find that actually as a society we have come to the view that we should not be undertaking intensive care for these babies.

I know that for a significant proportion of babies who are born prematurely there are challenges ahead beyond the spectra of severe disability. But those are not insurmountable.

And I know from work that has been done around the world that the quality of life experienced by survivors following very, very premature birth is actually very good for the majority of children.

At one time one might have envisaged getting our care so right that everyone would come out with a normal IQ and no disability.

That clearly is something that we have not achieved as yet. Perhaps we need to sit and contemplate whether that is ever achievable.

But unless we do continue we are never going to improve the outcomes for this group and there are always going to be children born at extremely low gestations.

We have some idea of the interventions that we can hasten with good outcomes. And we are trying to apply them. Time will tell whether we are effective at doing that.

Panorama: Miracle baby grows up is broadcast on BBC One on Wednesday, 22 September, 2004 at 21:00 BST.



SEE ALSO:
Miracle baby grows up
17 Sep 04  |  Panorama
Advice and information
21 Sep 04  |  Panorama
The debate: Dr Malcolm Levene
22 Sep 04  |  Panorama
Premature babies - the facts
22 Sep 04  |  Panorama
The Dutch policy
22 Sep 04  |  Panorama
Waiting for a miracle
17 Sep 04  |  Panorama
What is the EPICure Study?
22 Sep 04  |  Panorama
The EPICure children
22 Sep 04  |  Panorama
Emily Wright
22 Sep 04  |  Panorama
Isaac Bason
22 Sep 04  |  Panorama
Bright Asamany
22 Sep 04  |  Panorama
Layla Jane
22 Sep 04  |  Panorama
Thomas Rice
22 Sep 04  |  Panorama
Your comments
22 Sep 04  |  Panorama


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