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!