© Marc Ohrem-Leclef
Wellness
With type 1 diabetes diagnoses in children on the rise, a former Vogue editor shares the experience of her eight-year-old’s recent T1D diagnosis, the symptoms to look out for, and how to move forward
After months of checking my two daughters for signs of coronavirus, the irony of now wishing that my eight-year-old would be diagnosed with COVID-19 instead of type 1 diabetes—despite a gnawing certainty that it was the latter—was not lost on me.
Within five days, our eldest daughter Betta had transformed from a ball of boundless energy to needing help to get up from the sofa. Her healthy rosy cheeks were now hollow and wan. My husband and I exchanged worried looks as he sped to hospital on April 26. In an earlier Zoom call with our family doctor, we were told that time was of the essence. Every minute counted. Her words were starting to slur, her eyelids heavy.
After a lengthy COVID-19 screening in London’s Chelsea and Westminster Hospital’s empty paediatric wing, doctors diagnosed Betta with type 1 diabetes in less than 40 minutes. They admitted her with diabetic ketoacidosis (DKA)—dangerously high blood-sugar levels—which if left untreated can induce coma or even death. We reassured our daughter that everything was going to be OK, forcing ourselves to buoy.
As she spent the first of six nights in the ICU, her small arms were crowded with cannulas, her tiny chest full of adult-sized white ECG pads. Due to the COVID-19 restrictions, my husband and I were unable to both be with her in the hospital so I stayed at home with our youngest. I was too scared to cry or sleep, so I stayed up with her on Zoom reading Harry Potter or singing Joni Mitchell’s California.
The doctors assured us that we were right to bring her in when we did and explained that many parents have delayed going to hospital due to fear of COVID-19 exposure. In May 2020, the Public Health Agency (PHA) issued a report urging parents not to ignore the early signs of type 1 diabetes, or delay getting medical help during the pandemic. Diabetes UK’s national director Tina McCrossan explained that “parents, carers and anyone who works with children and young people should know the four Ts.” These are: toilet—frequent urination; thirst—a child being unusually thirsty; tired—feeling lethargic; and thinner—losing weight rapidly.
I asked myself the same questions on loop: how could we have missed the signs? How could my healthy child now have a life-changing illness? We had no family history, so what had triggered it? We had assumed her lagging energy was due to her missing friends during lockdown. We hadn’t linked her constant thirst and increasingly skinny frame, despite eating second and third helpings, with anything other than being a growing child. The diagnosis was the last thing we suspected—in fact, we were so busy looking for signs of COVID-19, we missed another health crisis hiding in plain sight.
There is a common misconception that type 1 diabetes is the same as type 2. The former is where the immune system attacks the pancreatic cells that produce insulin, the hormone needed to convert food into energy. Meanwhile, the latter occurs when your body is unable to make enough insulin or the insulin you do make doesn’t work properly. It’s unknown what causes type 1, while certain factors such as age, weight and ethnicity can put you at risk for type 2.
There is currently no cure for type 1, which is managed with prescribed insulin (research has shown that type 2 can sometimes be put into remission with a controlled diet). Diagnosis of type 1 in children is rising by four per cent each year in the UK and continues to increase around the world.
Although type 1 is usually diagnosed in childhood, it can also occur later in life. The charity JDRF fundraises to develop a cure and raise awareness of type 1, with some promising developments. The nonprofit Beyond Type 1 focuses on the importance of early diagnosis, drawing on a global roster of celebrities with type 1, including Nick Jonas who was diagnosed at the age of 13. Swedish footballer Antonia Göransson was diagnosed in her early twenties. Supreme Court Justice Sonia Sotomayor and the actor Sharon Stone, who both have type 1 diabetes, are powerful examples and show children what they can achieve.
Seven months after Betta’s diagnosis, life looks much like it did before. She’s back at school, going to netball practice and spending time with her friends. She injects her own insulin every day, and is happiest when her friends treat her normally. Yet, like many with invisible disabilities, the management of her condition is constant, requiring vigilant planning and organisation.
There are heart-stopping moments when her blood sugar drops suddenly (hypoglycemia, which can cause loss of consciousness) or when she misses class while waiting for her blood sugar to normalise. Thankfully, these are outshone by her incredible resilience. After returning home from the hospital, Betta sent me a text from her room testing out her new phone, now an essential tool to help monitor her blood sugar. With maturity beyond her years, she typed that while her diabetes was a challenge for our family, her father and I were doing a great job of taking care of her. My child was learning to dig deep.
A child’s type 1 diagnosis includes the whole family. Each meal requires a carbohydrate calculation and insulin shots, plus regular adjustments and monitoring throughout the day. The pressure of getting it wrong felt insurmountable. A mother explained that parents of children with type 1 never completely switch off, often waking up three to four times per night in the early phase of the disease and constantly checking their blood sugar monitoring devices. New technology promises to automatically make micro-adjustments to blood sugar levels, effectively mimicking the functionality of the pancreas. Most importantly, I held on to what other parents said: it would get easier. We would adjust and adapt.
A parent’s worst nightmare is that their child will have a life-changing illness. As a way of empathising, friends often said they would find it too difficult, the pain would be too great, but the reality is that you go on. You have to. Managing a child’s type 1 diabetes makes you more grateful for the good days, determined to make their lives happy and full. Joy for life doesn’t come from an absence of pain, but only sharpens your ability to spot it, making it impossible to take anything for granted. To borrow from my daughter: “If we look after each other, then everything will be OK.”
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