In Which the Dexcom Outage Did Not Actually Put My Daughter's Life In Danger

In case you're not part of the diabetes community, or you are but you've been living under a rock for the past week, there was a huge outcry recently over the fact that the share app for the Dexcom continuous glucose monitor went down the week of Thanksgiving. This meant that parents and caregivers of children with T1D as well as friends and loved ones of adults who choose to share their info could not see their loved one's CGM graph on their phone. The system was still working and still transmitting a signal to the phone or receiver of the person wearing the device, but no one else could see the info without looking at the device directly or retrieving the data through an alternate not officially approved method. The news actually became so big that the New York Times published an article about it.

As far as I understand, the outage only affected the U.S. and it occurred late at night or very early in the morning depending upon your time zone. This was especially disturbing to many because even those who can feel their blood sugar dropping to potentially dangerous levels during the day do not always wake up to low blood sugar overnight. Many parents got up multiple times a night to check their children's blood sugar before Dexcom. These people slept peacefully through the night the outage occurred, unaware of the fact that their phones were not alarming because they were not receiving a signal, not necessarily because their child's blood sugar was in range all night.

I completely understand the outrage people felt. Yes, this technology is relatively new. Yes, people got along without it for decades and we tend to take it for granted. However, the fact is that there are many people who have come to depend upon it and it's irresponsible that Dexcom allowed the situation to happen in the first place and, in the second place, did not immediately do everything in their power to notify users of the situation. The first notification was not sent out via social media until morning after the outage. A couple days into the outage the Dexcom share app on Kittygirl's phone began notifying us that share services were not working properly. Thanks, Dexcom. Did you think I missed that?

All that said, I still find it sad that there was so much panic reported in the diabetes community due to outage. I understand people being frustrated by the situation and angry that Dexcom took a long time both to notify users of the problem and to fix it. However, I don't understand the panic I heard about, including parents who were terrified that their children were going to die because they (the parents) couldn't see the children's blood sugar graphs.

For small children who are not at all able to treat lows themselves, I especially understand the frustration. The fact is, not everyone with whom we might leave our children is well trained in diabetes care. However, we can feel relatively safe leaving young children with minimally trained adults if we can follow their Dexcom and quickly communicate with the adult if action needs to be taken or hurry back to take action ourselves.

There is a difference, however, between serious inconvenience and serious danger. I fear sometimes that those of us raising T1 children in today's world suffer from a wealth of knowledge. We forget that children with diabetes managed to survive through the night and grow up to be healthy adults long before Dexcom came on the scene. Does death from severe low blood sugar happen? Yes, sadly it does. However, it is statistically very rare. There may have been a case of a child whose life was truly in danger due to the Dexcom share outage. However, the majority of the parents expressing this panic were simply buying into a prevailing mindset that does not consider all the facts.

I know this post has the potential to be controversial, but I still feel the need to share it. We have had Dexcom since very shortly after my daughter's diagnosis. It's an incredible tool and I would not be able to manage Kittygirl's diabetes anywhere near as well without it. Since she has very subtle reactions to low and high blood sugar that she can easily miss when wrapped up in something else, I would not feel safe leaving her as many places as I do if I did not have Dexcom as a backup to notify us of a potential problem.

However, I still did not, at any point, believe that Kittygirl's life was in danger during the Dexcom share outage and I assert that this was true of almost everyone (I'm leaving open the possibility of a very rare case that might have included true danger, though I don't personally know of any). The technology we have available to us today is amazing. I wish everyone had access to it and I think everyone who does have access should take advantage of it. However, we need to learn to keep it in its proper place and not buy into the abject panic if (really, when, because it will happen again) it fails. We should have backup plans in place and know how to function without the technology if that becomes necessary.