Friday, May 15, 2009

Who's Afraid of the Big Bad Statistic?

I have never loved statistics, and yesterday I heard a statistic I REALLY didn't like. Let me explain.

Yesterday there was a seminar at the Spastic Centre by the Rehabilitation Team at our kids hospital (I have written previously about Little A's appointment there). The head of the team spoke about CP and about the GMFCS (Gross Motor Function Classification Scale), which I have also written about previously. As you may remember I have been hesitant to get A classified as I don't really want her "put in a box" as such. Also, the classification has quite a strong predictive component, so you can guesstimate your child's level of function in the future based on their score. This is the part I baulk at because if the future looks 'bad' then I don't think I won't to know about that just yet.

Anyway, after listening to the talk and seeing descriptions of the different levels it is obvious Little A would be at best a level 4, or possibly even a 5 (1 being the 'best' and 5 being the 'worst'). And now for the statistic I didn't like:

"70% of Level 4's and 90% of Level 5's develop hip problems requiring surgery"

I thought I was unshockable by now and had the whole CP thing sussed out, but I was completely unaware of the high risk of hip problems requiring surgery. Just when you think things are travelling along smoothly something new to worry about always pops up.

More alarming statistics came my way from this study (I really should stay away from Dr Google). The study is trying to predict which children with CP will be able to walk based on their level of ability at age 2 (eg ability to roll, sit and pull to stand). Basically from these graphs it looks like A's chances of walking are slim. More disturbing though is the fact that around 10% of the children in her graph (rolls at age 2 but doesn't sit or pull up to stand) had died by age 14. Now THAT is frightening.

All these statistics do is encourage the fear (that is always with me) to grow bigger. I don't know if it is something all SN mums carry with them, or if it is specific to having nearly lost your child, but for me the fear is always there. Sometimes you can almost ignore it but at other times it is all consuming. Which leads to the question "Does the fear ever go away?"

OK, I'm going to turn the comuter OFF now and stop reading statistics!

4 comments:

Big brother, Little sister. said...

Alison, step from the computer! lol
I don't think the fear every really goes away though.
I always look at those stats and think Cooper is proving them wrong as will Miss A.

Lacey said...

Even though its nice to read up on stuff, sometimes its not worth it because it will just upset you. By the way, your blankie should be getting there anyday now.

n0thingbuteverything said...

You know I am also a serial googler and it more often gets me sad and more worried than providing any confidence or relief.

But Bron is right. Stats are there to be proven wrong. ;-). And instead of thinking too much about a possible, maybe, could be, might be future, focus more on the now and the AMAZING gains that little A is making every day. She's a star!!! xo

Megan H said...

"Lies, damn lies and statistics" xx