When my son developed Type 1 diabetes our family life changed forever

It started during the Easter holidays in 2019. My wife Becky and I had just returned from a short break in the New Forest with our children, and we’d both remarked on the number of times our six-year-old, Zac, was going to the loo. It seemed like a lot. On the other hand, he said he felt fine and, apart from the trips to the bathroom, wasn’t behaving in any way out of the ordinary.

“What shall we do?” Becky asked. She was due to fly to New York to visit an elderly aunt but was now wondering whether she should cancel.

“Go,” I said. “I’ll phone the GP, and see what she says. Maybe he has an infection.”

Deep down, though, I felt something more serious might be afoot. Although there was no history of Type 1 diabetes in mine or Becky’s family, I had a good friend with the disease and knew a little about the symptoms. Frequent urination was one of the classics (along with increased hunger); it suggests a person’s kidneys are having to work overtime to expel excess sugar from the bloodstream.

“Dr Google” did nothing to dissuade me and when my mother phoned the next day to say that Zac, who was staying over, was still making frequent trips to the loo and, on top of that, was eating more than normal (he’d had chicken and chips for dinner and then asked if he could have seconds of everything) the alarm bells became too loud to ignore. 

Twenty-four hours later he had a diagnosis, Becky was searching frantically for flights back to the UK, and our lives had changed for ever. 

Even if you have seen friends or family members pricking their fingers to measure their blood sugar and injecting insulin before a meal, nothing can prepare you for the sheer all-encompassing nature of Type 1 diabetes. Because your pancreas is not producing insulin, the hormone that marshals the absorption of glucose from the bloodstream, the carbohydrates in every morsel of food you eat have to be calculated and the corresponding dose of synthetic insulin worked out. 

Administer too much, and your blood sugar will go low, which can lead to seizures and, in the most severe cases, death. Administer too little, and your sugar levels go high, which can cause another potentially fatal condition, diabetic ketoacidosis, where the blood becomes acidic. High blood sugar over the long term also leads to the many complications linked to diabetes: from kidney disease and heart problems to nerve damage and blindness.

Zac, of course, was far too young to grasp the enormity of his condition. He got used to the injections incredibly quickly and, in the main, regarded his new regimen as just the latest in a series of rules imposed upon oppressed children by sadistic grown-ups. He is 11 now, and I think I have heard him complain about his diabetes once in all that time.

And, to be honest, although there was a lot to learn (and there still is), Becky and I have never asked ‘Why us?’ or broken down over possible, horrific scenarios. As a parent of a child who is (or was) too young to manage their diabetes you have one job: to keep their sugar levels as stable as possible, from one moment to the next. 

And in that, we have had a lot of help from the get-go, in the form of a continuous glucose monitor or CGM. A small sensor that Zac wears on his upper arm, it records his blood glucose level 24 hours a day and transmits the data to a smartphone that he carries around in his medical bag. (Giving my screen-obsessed son a smartphone at the age of almost-seven came with its own problems, but that’s another story.)

The app on his phone then shares that information with a corresponding app on ours, meaning we know what his blood sugar is at all times, wherever he is in the world. This was a huge boon. CGMs only went mainstream in 2018, so if he’d been diagnosed just a couple of years earlier, he would have had to test his blood sugar the old way – by means of a finger prick. 

Not only is this more painful and less practical, but, by its very nature, it can only give you a snapshot of your blood glucose levels; you have no idea if you’re going up or down. As Alistair Lumb, consultant in diabetes and acute general medicine at Oxford University Hospitals Trust, puts it: “It’s like trying to drive from London to Leeds and only being able to look at the satnav four times along the way.”

Most people with Type 1 do a finger prick in the morning, before a meal and then just before they go to bed. But many a time, Zac’s CGM has revealed that, while his blood sugar may be within a healthy range (between 3.9 millimoles per litre and 10mmol/L), it is heading down (symbolised by a downward arrow or, if it’s really spiralling, two arrows) or on the way up (one or two arrows pointing skywards). 

This is absolutely crucial intelligence: if Zac sees he’s at, say, 5mmol/L and heading down, all he has to do is eat a couple of jelly babies (a bag of which he keeps in his medical bag) or drink a glass of Coke or eat a cereal bar. If he sees he’s at, say, 13mmol/L and heading up, and he isn’t already waiting for a dose of insulin to work its magic, then he knows he needs to give himself a dose, sharpish.

But, lucky as we were to have a CGM – even though we paid for the privilege, at a cost of £150 per month – and despite the fact we had a stock of long-acting insulin that was, theoretically, meant to keep Zac stable throughout the night, my wife and I were invariably up multiple times, either forcing a jelly baby into his mouth (which he would chew in his sleep) or giving him an insulin injection. 

And because insulin can take up to two hours to take effect, and its impact depends on so many variables (including the combination of carbohydrates and fat in the food you have eaten, whether you have a cold, whether you have exercised that day, and whether, if you’re a child, you are going through a growth spurt) it was never possible to just go back to bed after an intervention and forget about it. The high-pitched alarms that sound on our phones when Zac goes high or low became the soundtrack to our lives. We moved into separate rooms so one of us could get a proper night’s sleep. The other one, who had been up monitoring Zac, would be exhausted.

All this changed in March 2021, when we were given a new system called a “hybrid closed-loop”. Dubbed an “artificial pancreas”, the invention is, in fact, a complex algorithm that links Zac’s CGM to an insulin pump that he carries in a belt around his waist. 

About the size of a matchbox, maybe a little bit bigger, the pump consists of a cartridge of fast-acting insulin (enough for about three days), a thin tube, a cannula and an on-board computer that “talks” to his CGM. Now, instead of us monitoring Zac’s levels during the night, the pump does it for us, giving him more insulin if it sees his glucose going up and reducing the dose if his blood sugar starts to head down. We haven’t given him an injection for two-and-a-half years. 

To be honest, I have no idea how we got one. Nobody told us we had won any kind of postcode lottery. And we weren’t part of a clinical trial. The diabetes team at our hospital – University College Hospital, in central London – simply explained how it worked and asked us if we’d like to try it.

As Zac’s primary carers, we benefit enormously. But for adults, who have to manage their diabetes themselves, the technology is life-changing. For the first time in history, they are able to go to bed safe in the knowledge that their blood sugar will not fall dangerously low while they sleep, or that, if it does start heading in that direction, an alarm will wake them (or their partner) and they can swig a Coke or take a dextrose tablet and get things back on track.

The system isn’t perfect: synthetic insulin does not act as fast as the natural version produced by a healthy pancreas, so it is still necessary to add up the carbohydrates in a meal and input that figure into the pump about 10 minutes before eating. (This is why the system is referred to as a “hybrid”.) It’s the last thing an 11-year-old boy wants to do. At school, he has to confer with the school nurse before lunch, which means he sticks out.

And, of course, if he doesn’t like his food, or he doesn’t want to finish everything on his plate, the pump cannot cancel out the insulin it has delivered – and so an urgent search for a sugary makeweight must be undertaken.

But, compared to where diabetes management was just a few short years ago, the hybrid closed-loop is an improvement few dared to dream of. And, after almost two decades of research, tests and clinical studies, led by Cambridge professor Roman Hovorka, Nice, the medicines regulator, announced earlier this month it was backing the technology, clearing the way for a roll-out on the NHS across England and Wales. (NHS Scotland has already approved the invention; Northern Ireland is lagging behind.)

Hilary Nathan, policy director at diabetes charity JDRF, describes it as “one of the most exciting and fundamental breakthroughs in medical health technology in the 21st Century”.

“It is not a cure,” she says, “but it is as close as you can get.” Others have called it the best news for Type 1 diabetics since the discovery of insulin. 

As for Zac, to call him “lucky” seems perverse. He still has a very serious disease. But we are grateful beyond measure that he was diagnosed in this extraordinary new era, where diabetes no longer has the power to dictate his hopes and dreams.