One of the most surprising aspects of taking on the role of a pancreas on behalf of our child has been the silent work that takes place in the dead of the night. This definitely came as a shock to my husband and I. By the time Noah was diagnosed he was 3 years old and sleeping well through the night. Broken nights were certainly becoming a thing of the past. Kasper and I had started to get our energy levels back up and balance was returning to our daily lives. Then overnight, we were thrown back to the days of having a newborn in the house, where you are dragged out of bed every night, sometimes multiple times.
Night-time hypos (low blood sugar) or hypers (high blood sugar) are the bane of every diabetic parents being. It isn’t just the physical side effects of endless sleepless nights, it is also the feeling one gets of being utterly alone in this world full of needles, pumps, insulin, dextrose, carb-counting and hospitals etc. We know we are not alone, we know there are millions of others in the same position, but in those moments when you look at your sleeping child and try to figure out how much correction bolus they need to bring their blood sugar levels down, you feel very lonely.
In our experience, dealing with a night-time hyper is pretty quick. Noah’s pump alarm beeps when his blood sugar levels are starting to get too high. We still use a baby monitor in his bedroom so we can hear when the pump sounds an alarm. One of us, depending on who has the night shift (yes, there are ‘shifts’ and they are absolutely bloody vital), will drag themselves out of bed and go to fix it with a correction bolus. All in all, a hyper usually takes less than 5 minutes to deal with.
Night-time hypos (or hypoglycemia) on the other hand are an altogether different kettle of fish. Night-time hypos are nothing short of horrific and they take a long time for parents to mentally come to terms with. The idea that my child could slip unnoticed into a deep hypo and never wake up while I am sound asleep, not having a clue as to what is happening is unimaginable, and yet for some it’s a reality. It is very difficult to get a grasp on how many diabetics die of hypoglycemia each year, largely due to the fact that immediately after death the body can still release some glucose. However, in 2011 the JDRF (Juvenile Diabetes Research Foundation) produced an advert stating that 1 in 20 diabetics will die of low blood sugar. This figure was based on studies by P.E. Cryer, T. Deckert and W.M.G. Turnbridge. Obviously there are many different factors that come into play here and I will touch upon a couple of these. Firstly, the chances of this happening in countries where diabetes treatment and care are at the top of their game (Sweden, The Netherlands, UK, US etc.) are SIGNIFICANTLY reduced and are rare as a result. Secondly, the latest insulin pumps – sometimes referred to (annoyingly) as an artificial pancreas (they aren’t…yet) – have warning alarms when hypos are likely to occur.
Nevertheless, immediately following Noah’s diagnosis (and prior to him wearing an insulin pump) both my husband and I suffered many nightmares on this issue. Sometimes we would suddenly sit bolt upright in bed and frighten the hell out of each other with our night terrors. It took months for us to get our heads around this and learn to cope with the fear of losing our son in his sleep. Nowadays, we put all our trust in the technology, the little insulin pump that he wears round his waist day and night. We have to trust it to do its job and alert us when Noah is heading towards the danger zone. And thank God we have access to this incredible technology, because without it we would be treating him ‘blind’ and sleeping with one eye open every night.
Even when a child wears an insulin pump there are plenty of down sides to night-time hypos in young children, here are my personal top 3:
- Young children’s bodies are constantly changing and growing. These changes have an effect on the levels of insulin a child needs. Every day is a new puzzle of trial and error for us. Some days that means we are up 4-6 times a night dealing with night-time hypos.
- Have you ever tried to wake up your child in the middle of the night and make him eat a dextrose tablet? Or (if the hypo is really severe) follow it up with a brown bread sandwich? It takes AGES to wake them up and AGES to convince them to eat that lovely brown bread sandwich. When this happens – it absolutely, totally and utterly sucks. For all of us.
- Even after treating a hypo and even when you know your child has the latest in insulin pump technology, you still have to find a way to go back to sleep because you need your strength to cope with diabetes tomorrow (and work, rest of family, daily life etc.). You need to put your worries aside and get some shut eye.