Seeing my daughter in severe DKA and raising awareness of type 1 symptoms: Clare’s story

Looking back now, my daughter Sophie, who was 13 at the time, had been showing the classic signs of type 1 diabetes, but we just didn’t realise it. Sadly, I don’t think many people know the symptoms.

We had been on a family walk and taken a bottle of water with us for the dog. It wasn’t a particularly long walk, so I hadn’t packed anything for the rest of us. Sophie kept asking if she could have some of the dog’s water and I remember thinking at the time, “gosh she’s thirsty.”

The following week I told Sophie to hop on the scales as I’d noticed she was looking a lot thinner than usual. This was magnified by the fact that the weather was hot, and she had put on a bikini to play in the garden with her sisters. Sophie normally wears baggy football tops, so I hadn’t really noticed the weight loss until that point. I said to my husband that we would need to keep an eye on this.

At this point it didn’t click that it could be diabetes. We hadn’t heard of the symptoms of type 1, and we certainly didn’t know anything about DKA. 

Going into DKA

A few weeks later Sophie started feeling unwell. Throughout the day she became increasingly lethargic and slept all afternoon, which was unusual for her. She didn’t have any appetite, was sick, and by bedtime she had become quite weak. This was May 2020, so it was during the first lockdown, and we knew there was no chance of us being able to see a doctor. My husband and I decided to just keep an eye on her that evening and see if she improved.

However, it was about 2am when Sophie woke me up. She was going downhill rapidly; her breathing was fast and within an hour she had become confused and incoherent and could barely string a sentence together. The rapid breathing became worse and was really frightening, with Sophie’s drowsiness now bordering on her becoming unconscious. We knew we had to call 111 and ask for help. We were probably on the phone for about 10 minutes before they decided to send an ambulance. I think at one point we thought we were going to lose her.

The ambulance arrived quickly, although it felt like a lifetime. The paramedics carried out a few tests on Sophie but seemed at a loss as to what was wrong with her. They then measured her blood sugar levels, which were 37mmol/L and she had a very high ketone level. They immediately said we needed to go to hospital, as Sophie had diabetes and was in DKA.

The paramedics rang ahead to the hospital and the paediatricians were waiting for us. Sophie was in severe DKA, so the doctors worked on her in Resus for four hours before transferring her to a high dependency unit once she had stabilised.

I remember a nurse giving me a hug in Resus and saying that it was a life-changing diagnosis. I suppose that’s when it first hit me, although the enormity really set in when the nurses came to show us how to inject and test Sophie’s blood sugar levels. At the time I felt like you had to be a nurse to understand it all.

Because of covid, my husband wasn't allowed to visit us in hospital, and I wasn't allowed to leave the ward. The next few days coping with the new diagnosis and being the only one of us trained in how to care for Sophie was draining. The staff were amazing and Sophie herself could check her own bloods and inject herself by the time we left hospital five days later.

Adapting to life with diabetes 

Due to the pandemic, normal home visits from the diabetes team couldn't happen but they initially kept in touch every day by phone. Online forums were also a valuable source of information and groups where other families offered their stories were great at letting us know everything would be ok and we weren't alone.     

"Sophie has always coped so well with her diabetes – she’s remarkable. However, it did impact on her normal life as a teenager. She would think twice about going to parties and being away from me and my husband for too long."

Six months after her diagnosis, Sophie was given the flash glucose monitor, as her fingers had become so sore from finger pricking. She had been quite obsessive with checking her blood sugar levels, for example at night-time when she would be worried about going to sleep if they were too low. We self-funded the continuous glucose monitor (CGM) for a while, which we now get on the NHS, and Sophie was accepted for an insulin pump.

The technology has been lifechanging and given Sophie a real sense of normality. Being 15 now, she goes out to lunch with her friends on a Saturday or to the cinema, and it’s given her more confidence to do this. She doesn’t want to be fiddling around with injections and it’s nice for her to have more privacy in terms of managing her diabetes. Me and my husband also sleep better knowing she is as safe as she can be.

Sophie is a twin and also has a younger sister, who have always been really supportive. They watched videos to learn how to test her blood sugar levels if me and my husband are not around and she needs help. It was a bit surreal for them at first but now they understand the enormity of it and how it impacts Sophie’s life. At times it’s been difficult for us as parents, as you feel you’re giving more attention to your child that has diabetes, but obviously Sophie needed that extra support.

Sophie has never struggled with the medical side of her diabetes and has always done whatever she needs to do to keep herself well. However, she never wants any preferential treatment and hates to feel singled out in any way. They have been learning about diabetes in her science classes at school and she often gets, “Let’s talk to Sophie about it,” which she doesn’t like.

I think there’s still a way to go in terms of raising awareness of diabetes. I’m amazed by how many people think Sophie’s diabetes was caused by her eating too many sweets when she was younger, or who say to me, “At least she can get over it by not eating sugar.” People also don’t realise how relentless diabetes is – you can never switch off from it.

I think above all else, everyone needs to know the symptoms of diabetes and recognise the signs of DKA. I wish I had known what to look out for, so I could’ve picked up on what was happening to Sophie sooner.