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Michael's Journey - from an early birth to now

Statistics, Research, and other stuff

UK Statistics on Premature Births (info from Bliss http://www.bliss.org.uk/)

The UK has the highest rate of low birthweight babies in Western Europe



Babies born at 23 weeks have a 17 per cent chance of survival


Babies born at 24 weeks have a 39 per cent chance of survival


Babies born at 25 weeks have a 50 per cent chance of survival

 

 

The reality of the above statistics:-

Of every 100 babies born at 23 weeks, 73 will not survive

Of every 100 babies born at 24 weeks, 61 will not survive

Of every 100 babies born at 25 weeks, 50 will not survive

The Nuffield Council on Bioethics is currently researching the ethics involved in saving extremely premature babies, and whilst it is not in my place to say if it is right or wrong to continue to save such premature infants.  One thing that I do hope will come out of this research, is the acknowledgement that lots of these little ones end up with long term disabilities.  That as a Society we need to acknowledge the level of support that these pre-term babies will need over the years. 

These little ones are not always going to be little, they will become adults.  The people who care for them now will not always be able to do so. 

Who looks after our children then????

Disability free survival

•  11% at 23 weeks  or 89% left with disabilities

•  20% at 24 weeks  or 80% left with disabilities

•  32% at 25 weeks  or 68% left with disabilities

Disability – Information taken from the EPICure study

(Published in the New England Journal of Medicine 6th January 2005)

 

There are two major groups of disabilities that are seen after very premature birth - physical problems that affect the way a child is able to do things, and learning problems.

The first group are those associated with physical problems such as cerebral palsy, blindness or deafness. Although each disability has a different cause and cerebral palsy is the most common these conditions tend to be easy to identify as a child grows up and the problems stay with the child as he or she develops. Cerebral palsy is a very wide group including children who have difficulty walking and with posture and also children with very little problem in day to day life.

In the EPICure Study (babies born at 22-25 weeks of gestation) cerebral palsy occurred in 20% of survivors that we examined. However only half of these children had serious disability and in the rest we judged the disability as mild. Serious hearing and vision problems were much less common (6%).

The next figure shows the proportion of children with physical disabilities (the frequency is similar at each week of gestation):

 

 

The second area of disability in ex-premature children is often termed “learning difficulties” or “cognitive impairment”. Again these probably have different causes to physical disabilities but can be difficult to identify at early ages. Such problems become more apparent when the children get to school and are carefully assessed by their teachers.

For some children it is clear much earlier that thee are problems and steps can be taken to try to help the child before he or she goes to school. These difficulties can be quite severe and may be associated with challenging behaviour, in particular attention deficit disorder where a child his difficulty in attending to tasks, is quite easily distractible and sometimes difficult to control.

Learning difficulties are by far the most common disabilities found after extremely premature birth. In the EPICure Study 10% had very severe cognitive problems and a further 31% problems that we think are likely to need extra help at school.

Combining these problems with physical difficulties allows us to calculate the overall disability rates which are shown below. Although disability affects a high proportion of surviving children, it is most important to remember that most of the children in the EPICure study were doing reasonably well at school, keeping up in the classroom and had normal behaviour patterns. This is something that is often not emphasised in discussions.

 

Finally we can use both survival and disability from the EPICure study to calculate the chances of surviving without severe or moderate (i.e. serious disability):

 

 

Survival free of serious disability at birth

Survival free of serious disability after admission to NICU

22 weeks

1%

5%

23 weeks

3%

6%

24 weeks

9%

12%

25 weeks

20%

24%

Note: These figures relate to the EPICure study for births in 1995 and six years of follow up

It is obvious from the Trent Neonatal Survey information at the top of this section that survival has improved – with this the chances of surviving without serious disability have improved a little but as yet we can't really tell you the exact figures as yet.

What happens if we use the Trent survival figures rather than the EPICure survival figures as they show some improvement?

If the disability rates have remained the same as in EPICure then the equivalent figures following admission for neonatal intensive care will be approximately

Disability free survival

•  11% at 23 weeks

•  20% at 24 weeks

•  32% at 25 weeks

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