Thursday, October 21, 2010

dead in bed.

I'll admit I'd never heard about the "dead in bed" syndrome until a coupled days ago when a 13 year old girl with Type 1 diabetes went to sleep with a good blood sugar, in great overall health, and never woke up.

I will make no attempt to understand what the parents of this girl must be going through. I have myself watched my daughter's life flicker and come to within seconds of ending in my arms... is an image that I will never be at peace with. To actually have your child torn from you without an explanation, a cause, or a reason is unimaginable. Once again, diabetes gets off without a mark on it....dead in bed syndrome has no official cause but is responsible for 20-60 deaths per year or the equivalent of 6% of all deaths in type 1 diabetics under the age of 40 years old.

6% of type 1's die for no known reason. The assumption is that overnight hypoglycemia is to blame. But not diabetes, amazing. This was not the fault of anyone's, certainly not the parents, they did exactly what they should's just one of those things...except that it's a young life ended shortly and without closure. I pray for their family that they can be a peace with this tragedy.

Over the last few weeks, out of a sheer desire for a full night's sleep, I have skipped Cadence's 2am blood test a couple times....3 years of an alarm at 2am 7 days a week, I needed a bit of break. To read this horrific news reaffirms that we need to be vigilant about our kid's blood sugars. Their life literally depends on our diligence both in the short term (dead in bed) and the long term complications. We also need to galvanize our efforts as warriors against this disease, educate, fundraise, lobby for a remedy. Just this morning a huge segment on our local news channel about the rising costs and complications of "diabetes" without identifying the types! It was from the Canadian Diabetes Association which is almost entirely type 2 focused, talking about prevention of long term outcomes and the cost of 2 billion dollars a year to the province. What they did not mention was that the Province of Alberta doesn't cover a DIME of type 1 prevention costs, insulin, test strips, syringes, insulin pumps. People who can't afford to protect their children, have no other option but to choose conservation of test strips, re-use a syringes, squeeze another few weeks out of that vial of insulin. It's not right and has significant consequences.

Teach people at every opportunity that Diabetes is multifaceted and needs the attention of citizens, our elected officials, the change needs to come, come swiftly, and be significant in order to prevent another young life ended without a reason.

Learn on November 14th for World Diabetes Day.



phyllis said...

My granddaughter, along with many other Type 1 diabetics deserve to be supported by all levels of government. Let's help people understand that Type 1 diabetics do not "grow out" of their disease and their vibrant lives depend on insulin, good food and supportive environments at all levels.

eyeswideopen said...

I'm continually impressed and amazed by the courage and strength that you and Nik demonstrate. You are true leaders in education and advocacy for this disease and it's treatment and cure.
Thanks for sharing the videos of cadence - it's really eye opening to get a glimpse of how this affects her day to day and how she grown to do her best to live with this disease. I have no doubts that she'll be running and winning marathons just like her fantastically fit and amazing mum, and kicking her dad's arse on the golf course!!
miss you guys - nat

Lorraine of "This is Caleb..." said...

Each night I let even a little more time elapse between bg checks I get a little anxious as I approach Caleb's room and relieved when I hear or see signs of life.

What strikes me about that is how normal it has become. It hardly phases me that I have to wake up and worry if my son is breathing on a nightly basis.

I'm not sure if that's good or bad. A little of both I suppose.