Our Story: Type 1, One Year On...
By Maddie, Rob & Otis
It was 30th October the day before Halloween. Historically this has always been one of my favourite festivals. I couldn’t wait to dress up Otis, then 20 months old, as a skeleton and take him to his first Halloween party. The year before he had only been 8 months old and looked so cute dressed as a pumpkin whilst his Dad, Rob, innocently stood behind him dressed as an axe murderer!
This year was different though... I’d been saying to my mum for a while, that for me this was the worst age. He had changed from a smiley, happy baby, to quite a moody, crying toddler. Looking back, his face had become quite sallow and he seemed to want to be constantly picked up. He hated any noise, always seemed to have infections and had made very little attempt at speech for some while.
We had been taking him to and from the doctors since the previous Easter and during this period I began to slowly accept that maybe some babies do just get more ill than others? I was very concerned with why he had pale stools and was always constipated but the doctor just said some babies are like this. As the summer progressed though, so did his thirst and wetting. He had a toddler bottle and would literally drink 4-6 of these bottles of water a day. We were also constantly telling him off for drinking the dirty bath water (often by the jug!). However, being first time parents we put his thirst down to curiosity and his wet nappies down to false advertising. We tried out every brand going to find the most absorbent, but he still used to wet through up to three nappies and outfits a day. The crescendo to this period arrived at the Halloween party. I had changed him just after lunch and he’d been silent all the way there. Not wanting to walk, I carried him from the car park up the stairs to where my friends and their little boys were all tearing around in their fancy dress costumes and loving the soft play.
Just as I was catching up with a couple of the mums, my friend Lucy went to pick Otis up as he was crying and she said. ‘He’s wet right through Maddie’. Sure enough his entire skeleton outfit right up to the neck was sobbing wet. ‘Ah, I’ve only just changed him I moaned’. ‘When was that?’, she replied. ‘Just before we left, I mean, I’m changing him every hour, it’s ridiculous’. Lucy was obviously concerned and came into the bathroom to help me change him. ‘Rafa doesn’t wet his nappy like that in 12 hours Maddie, I really think you should take him back to the doctors’.
After changing him I was chatting to my friend Anna who is a nurse in A&E. She was really concerned too. ‘I don’t want to alarm you Maddie, and it’s probably just a bladder infection, but all this drinking and wetting, have you thought about diabetes?’ Of course during the early hours I had been googling all sorts of symptoms and had briefly seen this but had brushed it off as being something older children get. I agreed I would make an appointment for him ASAP just to be safe. Soon after I took Otis home, he was clearly un-happy but as it was a Friday and not wanting to cause a fuss, I thought I’d call the doctors first thing on Monday morning.
After a brief consultation with the doctor (who also turned out to be the diabetes specialist) he suggested it probably was a bladder infection, but to book in with the nurse that week and she could do a urine swab on the nappy to check his blood glucose levels. ‘I’m sure it’ll be fine though’, he reassured me and prescribed another course of antibiotics.
Otis had had at least 3 courses of antibiotics and lots of Calpol during the months leading up to his diagnosis so we reluctantly accepted that his immunity must be a bit down due to starting nursery. We managed to get an appointment with the nurse the following Wednesday and she was equally reassuring although unsure she would actually be able to obtain a urine sample from the nappy. She persevered and as she did I watched her face change from jokey, to extremely concerned, as she frantically checked her urine sample chart. ‘I think I had better do a finger pick test‘ she added. As the blood glucose machine counted down I sensed the nurse’s anxiety. Having no experience of this test I was still fairly relaxed. Within minutes though, our lives changed forever...
It was now 4th November 2015. We were rushed into the waiting area and the nurse went to speak to the diabetes specialist doctor. We were then quickly ushered back into the doctor’s room, who broke the news that this was most certainly Type 1 Diabetes. He explained our blood glucose levels should be regulated by our body between 4-7 with no ketones (fat burning hormones) present. Otis had a reading of 37 and had very high ketones at 7 indicating his body was now entering a life threatening state and burning fatty tissue to survive. We were told he needed to be hospitalised immediately.
The trip to hospital was so scary. Having been crying non-stop for what seemed like hours, Otis was now eerily silent. Both of us were questioning what it all meant. Maybe it’s just a virus? Maybe he’ll get better? We just didn’t have a clue.
Otis had been fast tracked when we got to hospital straight to the children’s CAT unit. They immediately begun a series of tests to ascertain the level of his Diabetic Ketoacidosis, a life threatening condition caused as a result of prolonged high blood glucose. The doctors and nursing team were fantastic and confirmed he did have Type 1 Diabetes and explained part of his pancreas had now failed and that he would need to inject a hormone called insulin for the rest of his life. We were propelled into an absolute state of shock. Not our little boy, please no! How can we reverse this?
We spent the next week in hospital slowly nursing Otis back to health. He was hooked up to a drip and monitors and his blood was taken and tested every hour and then every two hours through the night and day. He just lay there in his metal cot in a strange ward with me in a fold-out bed beside him. We attended intensive training sessions to equip us for a life time of self-management. We were exhausted and continued to work through our shock and emotions. It was impossible to sleep as he woke and stirred for every test. For the first 48 hours he was not allowed to eat and just lay there drifting in and out of sleep as we learned by day how to count every carbohydrate he would eat and match it to an individualised injection of insulin. We were educated on all the complexities of Type 1 and what it meant to have hypoglycemia (low blood sugars) and hyperglycemia (high blood sugars). We were assured that this had nothing to do with either his or our lifestyle or anything we had or hadn’t done. It is an auto-immune disease that had no cure and he would live with it for the rest of his life.
The injections were the most difficult and harrowing part of the training. Before every meal we learnt how to test Otis’ blood, before weighing and counting the carbohydrates he would be eating, all before he could be given an injection to match his exact insulin dose. Only then could he eat his food. He didn’t understand why others around him in the ward were eating and he had to wait. This was compounded by the fact his little body had been literally starving for so long because it was simply unable to process carbohydrate and we didn’t know. If he didn’t eat everything on his plate (a likely outcome for a toddler!) we would have to try and make the carbs up with anything he would eat). It was just heartbreaking watching our baby boy going through so much and knowing that this would now have to become our new normal. We grieved for the baby we had before and reflected on the irony that pre-diabetes we hadn’t let him have juice or anything sugary for fear he would develop a sweet tooth.
Finally, after a week in hospital, Otis was allowed home under our care. We soon realised that whilst the training and education in hospital had been excellent, remembering all we had learnt and then teaching our extended family would prove very difficult indeed.
The next few weeks and months were extremely hard, with two hourly blood checks required night and day, alongside injections both morning and night and before every meal. Adjusting to being full time carers night and day whilst being working parents was very difficult indeed. But, perhaps even more draining, was the relentless streams of questions from concerned friends, family and strangers, often asking if ‘Otis was better now’?! This is a question which still plagues us but I guess we are just getting better and more honest with our answers.
The truth is... Otis will be on insulin and doing blood checks every couple of hours for the rest of his life or at least until a cure is found. He will continue to experience daily episodes of hypogycemia (low blood sugars) or hypergycemia (high blood sugars) because his need for insulin changes with exercise, the weather, growth, or illness. His dose is just not an exact science and the consequences are a constant worry to all those who both understand the condition or look after him. A serious high or low can result in a life threatening coma, but the scariest time is at night when he often drifts into a hypo (low) and we live with the very real fear that one day we might not wake up in time to treat him.
The one ray of hope is that quickly after hospital Otis was funded for an insulin pump and continuous glucose monitor. This meant his insulin could be delivered via a small cannula (changed every two days) on his lower back and we would get alarms when he was going high or low. Although a little quiet, these alarms can be amplified by a baby monitor so at least at night now we can be woken by them rather than rely on random guess work.
So, the sheer amount of information we needed to learn and retain was overwhelming and we were frequently in contact with the clinic or admitted to hospital at a great cost to the NHS. We were frustrated that the previous website offering self-management help had run out of funding and our family and friends who had not attended the hospital training, admitted they were now too scared to look after Otis. It was just heartbreaking feeling the loss not only for our son or his independent steps but for us as we slowly realised we would seemingly never be able to be more than a few yards away from him.
Pre-diabetes we had worked as videographers and had been part of a business accelerator programme as we had recognised we needed to work on a more sustainable family business model. However, the demands of the diagnosis forced us to take time out to focus on Otis and learn how to self-manage this horrible disease.
We were constantly googling for help managing Type 1 but video tutorials were often hard to come by or not age appropriate. We wanted to be able to reassure our extended family that they could look after Otis and refer them to refresher websites but none seemed to be easily accessible and they confided that at this point they were just too scared to look after Otis.
Full of emotions and never more motivated to claw back some personal freedoms again we began to explore how we could create a more sustainable video support model fit for the digital video age. We knew, first-hand, how critical it was for patients and carers to have access to training 24/7 and since we ran our own video production company we decided maybe we could apply our video skills to create a sustainable social enterprise: an easy to use video training platform to enable more families and carers to access both initial and refresher training without needing to call the NHS. We tentatively emailed The Leeds Children’s Diabetes Hospital Team and had an astounding response. 33 emails from Diabetes Specialist Nurses and Consultants flooded in and validated the innovation. We quickly partnered with the Leeds Children’s Hospital team who recognised not only how much NHS resource we could save, but also how long term outcomes for self-management would improve.
We re-applied for a place on the Natwest business accelerator programme called Entrepreneurial Spark and focused all our frustrations into building a supportive visual solution for newly diagnosed families and young people with Type 1 Diabetes. DigiBete, our new Social Enterprise grew from strength to strength with the support of the Entrepreneurial Spark Team and my Dad, John, an accountant with 40 year’s senior commercial experience, who has joined the DigiBete team as a Finance Director and who has been able to guide us through the regulatory, funding and governance issues.
During this initial six month period, we won three awards totalling £4,000 - two for pitching and one for our ‘GoDo attitude’. Our very productive partnership with Leeds Children’s Hospital Diabetes team has just gone from strength to strength, thanks to the strategic leadership of Dr Fiona Campbell, who also holds several positions nationally, and also to Caroline Mullier, Diabetes Nurse Specialist who have both given so much time, energy and commitment to shaping and steering the management of the platform.
We launched our self-funded first website hosting 10 essential training films at the Leeds Children Hospital, Parent and Professionals Diabetes Conference in June this year, which was extremely well received. Feedback has also led us to develop and flesh out how we can better emotionally support youngsters and families living with Type 1 Diabetes.
Since then, we are continuing to build momentum and have big plans. We have now fleshed out a full and robust ‘not for profit business model’, and registered DigiBete as a Community Interest Company (C.I.C). We are very proud of our strong and experienced management team and it is this team which has won us the recognition of some social enterprise funding.
Being parents of a child with Type 1 Diabetes and working in collaboration with the NHS has opened up so many possibilities for understanding how we can use our creative skills to extend the brilliant work the Leeds Children's Hospital Diabetes Team do, and for the team to gain a deeper, empirical understanding of the experiences families living with diabetes face outside the clinic and hospital environment.
So, whilst personally, Type 1 Diabetes continues to take its toll on the family, we have surrounded ourselves and Otis with the authentic love and support from the very same community. Our efforts for better awareness and positive social change have enabled our heavy hearts to be somewhat freed from the frustrations and fears of the disease. For every difficult day or night we have, we at least wake up the next day feeling we are contributing something positive to an otherwise difficult situation, and in the meantime, we are constantly learning more about the complexities of self-managing Type 1.
Otis is now thriving again, and continues to bring joy and light into our lives. He is a tenacious and loving toddler who has learnt to say ‘I can do it’. He loves to ride his balance bike at considerable speed though the park and is the first to say ‘are you okay? if he sees someone looking sad. He has settled well into his checking routine and is now learning to communicate when he is going high or low. We couldn’t be more proud of him.
We have embraced a problematic and life changing family issue and in the process, have embarked on a journey with a clear vision of how we can help ourselves and other families achieve a better long-term outcome for our children.
We really appreciate your support, and together we can improve the lives of people affected by Type 1 Diabetes.
Maddie, Rob & Otis