Tuesday 9 November 2010

A calculated look at "dead in bed syndrome".

Ask the parent of a diabetic child about what is their greatest fear, they may well spout the charmingly named "dead in bed syndrome", which is exactly what it says on the tin. There was a death from this in the USA recently, triggering lots from the D-community to display remembrance candles. Of course, I have the utmost sympathy for the family of this child, but I found some of the D-community's response, (dare I say it?) a little mawkish.

Lots of D-parents, and let's be frank, it's mainly D-moms rather than dads, that blog or use facebook, were describing how they live in fear of DIB syndrome, how they watch their kids overnight, and are unable to sleep themselves. Maybe I'm a (part of the way along the autistic spectrum) cold fish, but I like to play the odds game, when assessing any situation, and determining my reaction on how to handle it. Maybe what I say will give some people some reassurance, others may just consider me analytical and heartless.

Looking at http://www.childrenwithdiabetes.com/ (and taking what they say at face value - maybe a big assumption?) it says that for every 10,000 patient years, between 2 and 6 people die from DIB syndrome. Taking the average figure of 4 deaths, that is of course 4 too many. But it means that one dies for every 2,500 patient years. (That could be expressed as "out of a sample of 2,500 people with diabetes, one of them will die from this syndrome per year".) Very unlikely for any single individual, but nevertheless distinctly possible.

So how does this compare with our risk from lots of other diseases and dangers? In the UK about 2,500 of us a year, get up in the morning, bright eyed and bushy tailed, and don't ever return home, as we get killed in car crashes. What about meningitis? Here today, but maybe gone the day after tomorrow. Heart failure and instant death from undetected problems may be out there stalking us. And there's hundreds of other diseases to fear, where maybe we have a day, a week, a month, or a year to live?

How do any of us (not just D-people) sleep at night knowing our loved ones could be taken from us at any time? The answer of course is that most of us just get on with life, and don't think too much about that aspect. But with chronic conditions like diabetes we are constantly reminded of our mortality by the nature of the condition, and the complex management that it needs.

So let us look at the risk that our beloved will die this evening from DIB syndrome. Starting from that 1 in 2,500 chance of it happening in a year, the odds for tonight are 1 in 912,000. A risk I could do without, but is it one we should habitually lose sleep over? I'm so tired I think I'll sleep tight, even though it's my turn tonight and I'll be up for the nightime duties with our little boy.

I hope Frank's picture above isn't too scary, and that this blog has given at least some of my readers some solace over something we would rather not have to think about. Best wishes to us all. And deepest sympathies to anyone who loses someone tonight.


4 comments:

  1. I cannot spend my life wondering what might happen to me or my family, even with diabetes in the mix. We all take risks ,some more obvious than others and yes at times we back down from taking a risk just in case. I will not let Diabetes make me back down. Thank you for this post with which I agree with wholeheartedly.

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  2. From Regina Pasko, via Andrew Stanley Budd's Facebook: Very well stated! I suppose really, we could live in fear every minute of our lives about some thing or another...........but is that TRULY LIVING? We are new to the "D" community, under a year, and it is nice to meet people with your attitude!! Thanks much!! xxx

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  3. From Jill Ball via Facebook: I love your blog Andrew, read it randomly in big chunks and it always makes me smile and think WE MUST HAVE YOU GUYS OVER lol. Love your mindset about diabetes and stand in awe of your ability to look it square in the face and stick your tongue out! xxx

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  4. A good down-to-earth, cold fish, fish-out-of-water and whatever else you want to call it piece of writing. Yes, yes, get on with enjoying life and making the hard bits enjoyable too. x x x

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