Saturday, January 13, 2007

Neo Doctors Blogs

Someone sent me the link to these two Blogs, both written by Doctors who work in Neo-natal Units - there have been some interesting discussions going on within the comments, about outcomes for extremely premature infants.

I have to confess to having taken part in some of the discussions going on in there. I have no problem with saving premature babies at all, BUT I am a strong believer in parental involvement, Especially as a parent who discovered things about their child by accident, with my limited knowledge of prematurity, and my ignorance yes I honestly thought that it was just a case of putting him in an incubator and waiting for him to get fat, fit and healthy!!!

I have to be honest and say I also think that most of this information needs to be shared far earlier than when you find yourself hurtling towards the world of prematurity like a speeding train. The more who are aware of what can be a very real outcome of prematurity then maybe just maybe people will come to understand what the reality can be for many of us.

Unfortunately prematurity does not appear to be something we are ever going to be able to prevent, and younger and younger babies gestation wise are being saved. I've posted below the research done here in the UK the EpiCure study which has, been ongoing for the last 10 years, they have tried as far as is possible to keep track with all babies born between 22 & 25 week gestation; in order to see how these little ones develop.

The figures from the Epicure Study show the following levels of disability, within babies born at those gestation's:

Combining learning 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.

Percentage of Children with different degrees of disability

Gestation at Birth No Disability
23 weeks or less 24 weeks 25 weeks
12% 14% 24%

Mild Disability - e.g. low normal IQ scores, wears glasses & has a squint, mild hearing loss, minor neurological abnormalities
25% 36% 35%

Moderate Disability - e.g. moderate learning problems, cerebral palsy but walking, hearing aids, some vision deficit
38% 22% 22%

Severe Disability - e.g. severe learning problems, cerebral palsy & not walking, profound deafness, blindness
25% 29% 18%

Chance of Survival without Severe or Moderate (i.e. serious) disability

Chance at birth going onto survive without Serious Disability

22 weeks 23 weeks 24 weeks 25 weeks

1% 3% 9% 20%

Chance after Admission to NICU of going onto survive without serious disability

5% 6% 12% 24%

Note - these figures relate to the EPICure children born on 1995 and how they were at their 6 year follow up. The reason why the chance of surviving without disability goes up for babies once they are admitted to a Neonatal Unit is that this group has already excluded those babies born alive but who, sadly, died very quickly after birth.

It is obvious from the Trent Neonatal Survey information on the previous page 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

23 weeks - 11%
24 weeks - 20%

25 weeks - 32%
So it's been interesting to read some other parents points of views. Anyway if you want to check them out here they are!


Kari said...

Very interesting post! I cant wait to read these blogs!

Glad to see you blogging again! Ive missed seeing you around!

Lisa said...

Thank you for the info! Very interesting.

A said...

The stats are sad, and interesting. And when my son, born at 25 weeks gestation was not doing well, full of hope, too.
I think the thing to remember with statistics is that they're just that, statistics. Our babies are so much more than numbers.
The numbers are important, but we have to be areful not to lose sight of the individualss in all those numbers.
Real people are suffering every day.
And in the particular NICU in which we spent 18 weeks, many families were being pressured to make a choice (one way or the other) which they did not want to face again and again.
Thank you for providing the numbers. And thank you for helping the big wide world to remember that each number has a person and a family attached to it!