Last week the diabetes community learned of the sudden death of a 13-year old girl named Eilish, a Type 1 diabetic who went to bed and never woke up. Since that time, I, like many others, have thought a lot about the unfairness and randomness of this tragedy (see Dead in Bed Syndrome: A Candle for Eilish).
I wanted more answers. What causes ‘dead in bed syndrome’ and how can I prevent it? Are there other factors, such as heart issues, involved? Are the instances of ‘dead in bed syndrome’ increasing or are we just hearing about them more often as the world becomes more connected through the Internet?
As I usually do, I read a ton of blogs and scoured the news sites and message boards. In addition to the diabetic community’s outpouring of support for the family and the subsequent fear such a scary event can stir up, I found a few nuggets I wanted to pass along.
Ann Bartlett, a blogger at HealthCentral.com, says Eilish’s death is the fourth one this year that she has heard of from ‘dead in bed syndrome.’ She notes in the article that it is impossible to tell whether hypoglycemia was involved in Eilish’s death because autopsies cannot show whether it was a factor. You can check out the full post here.
Amy Tenderich, author of the blog Diabetes Mine, ran a guest column from Michelle Page Alswager, who lost her 13-year old son Jesse in February to ‘dead in bed syndrome.’ Michelle’s post, like several others I read, focused on the need for additional information about this awful phenomenon.
“I can tell you from my point of view that there are no answers from me or any of the other moms and dads,” she writes in the post. You should check out the full column here. “I can tell you not only are we baffled by our healthy, beautiful kids dying suddenly, but so are coroners and doctors.”
The remainder of her column focused on etiquette when approaching a grieving parent or family member, especially on the Net. Among the tips was her suggestion to avoid asking for details about the child’s death. The family will share the details if and when they are ready. If you see something negative posted on a message board, Facebook, or any other place, be proactive asking the person or administrator to remove it.
“I can’t stress enough how painful it is to read untruths from scared parents who don’t know the details and are making assumptions,” she writes. “Stop them before the parent sees those kind of posts because I guarantee eventually the parents will be Googling for information about their children and the pain is awful when you read something ignorant or hateful about the death.”
The bloggers did a great job reflecting the sentiment of the diabetes community and Michelle was very brave for sharing her story to potentially help others. However, as expected, there is simply a lack of concrete information about this disease and no apparent way to avoid it.
While my search yielded few answers, I did find it amazing the level of support expressed by those in the diabetes community and how much good social networks can do when dealing with tragedies. Dead in bed syndrome is rare. It is scary. It is a part of life and yet another risk of living with Type 1 diabetes.
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If we keep raising questions, we will get answers. I appreciate your article. There are a lot more than 4 deaths recently, I know of many more just in the short 8 months since Jesse died. We need researchers to pay attention. It may be a coincidence, but why so many teenagers at their 10 year anniversary with this disease leaving us so soon?
Our diabetes society – including me – did a bang up job not talking about deaths. Now people are talking – and it is ok. I’m proud of everyone for wanting answers rather than pretending it doesn’t exist.
As a parent, losing a child is my worst fear; as a parent of a diabetic child, this is the type of thing that continues to have me getting up once, twice, five times a night to check on him.
In no way would I want to see this extremely valid and important concern diminished, but I am curious how the number of incidences of “dead in bed” among T1 diabetics compares to the number of unexplained deaths of non-diabetics within similar age groups. Is it possible that T1 and these tragedies are unrelated?
I want to know as well why this happens and more so how to prevent it, but I can’t help but wonder if the Type 1 connection is as strong as may be assumed?
I’m curious about why the autopsy cannot test the blood? When I have been EXTREMELY low in the past I would throw off ketones which have a very distinctive smell and the whole bed became very wet.
[...] Eilish, a Type 1 diabetic, went to bed and never woke up. At the time I wrote a column entitled ‘Dead in Bed Syndrome Raises Many Questions, Yields Few Answers’. I wanted to know how to prevent it and whether the instances of ‘dead in bed syndrome’ were [...]