How it Feels: A baby with Type 1 Diabetes (Part 1)

Hands up if, like us, your knowledge of diabetes (in all its different guises) is limited. Well, it’s currently Diabetes Week, so now’s your opportunity to understand it a little better. This incredible guest post will be split over two nights, with the second instalment due to be posted on Sunday evening.

Mother Sider Claire and her husband Chris have two amazing children – Grace and Charlie. At 15 months, Charlie became one of the youngest people ever to develop Type 1 diabetes in the UK. Life changed overnight and the adaptation and fortitude that he – and they – developed is nothing short of remarkable. Prepare to be amazed by their resilience and humbled by the incredible work of the medical professionals they’ve encountered on their journey.

Over to Claire…

‘The fog that surrounds Charlie’s diagnosis, and the period running up to it, still hasn’t cleared. Neither Chris nor I are able to remember the events clearly and we’re still not strong enough to try, six years later. We struggle to deal with the parts we do remember and neither of us can look at photos from around that time. Our amnesia surrounding it is our minds way of protecting us, because if we actually address the horror of it, we would probably do more damage. Put plainly, we were hours away from losing our baby boy, likely even minutes. One very clear memory from that time is being told if we had left him any longer, he wouldn’t be with us.

That makes it sound as though Charlie was suddenly very ill, but it was far more insidious than that. In the ten days prior to him being diagnosed he picked up a couple of infections. He had hand, foot and mouth which made him crabby. Then he picked up a respiratory infection that made him wheezy, snotty and slobbery. So far, so normal. At 15 months old, these were common illnesses, he was in a nursery setting where germs are shared like sweeties! There was no way he could have communicated to us just how rotten he was feeling.

There were other things though. With hindsight and time to magnify them, it’s hard as parents to believe we didn’t join the dots. We blame ourselves and we always will. He started wetting through nappies, absolutely soaking them. We put it down to him needing the next size up as that’s what had happened previously; the leaks started and we moved him up a size. He guzzled his milk and water. Nursery told us he was drinking a bit more than usual but nothing that was setting alarm bells off. The antibiotics he’d been prescribed may have made him more thirsty than normal. He looked pasty and napped more, but we put that down to the infections he was battling. He was grizzly. Not just a little, but a lot. Screaming that seemed to have no cause or explanation, followed by periods of exhaustion when he just wanted to be rocked and cuddled. Concerned, I made a call to 111 and explained all of his symptoms. The lady on the end of the phone told me, “it sounds like he’s just got a cold, but the doctor might want to test for other things, like maybe diabetes. Wait and see how he is after the weekend and then take him to your GP again on Monday. I don’t think there’s anything to worry about.”

On Mother’s Day, April 2011, Charlie crashed. I was playing rugby and could hear Charlie screaming on the side-line, with Chris unable to settle him. This was so unusual; Charlie was a happy baby. He giggled at everything. He’d never crawled, pulling himself up onto his chubby legs at 11 months and toddling off. Now he swung between inconsolable and lethargic. There was something about his screaming that afternoon that told me something was very, very wrong. I walked off the pitch and told Chris to take him to A&E. I ran back to the changing rooms to grab my kit, handed Grace over (to whom, I can’t remember) and got someone – my best friend, I think – to take me to A&E. I have no memory of how I got there but I remember how sick I felt, and how slow everything seemed.

15 minutes later I walked in to A&E reception and the Receptionist showed me where to go. I saw Chris holding Charlie who was lolling on his lap, barely conscious. Chris’ face was ashen and the look in his eyes told me everything I needed to know. He explained that Charlie had collapsed on the short drive to the hospital. He described him as being floppy and a dead weight as he rushed Charlie to reception with his head cradled over his shoulder not knowing if he would wake up. They’d ushered him straight into this side room. A nurse pricked his finger, dabbed it on to a machine and waited for a number to register. As soon as the figure showed, she pulled out a pager and left the room. Within minutes we had been escorted through to a crash area. I sat on the bed, with Charlie on my lap and stripped him off. That’s when we both noticed the panting. Rapid, shallow breaths. How had we missed that? Was it new?

A paediatric consultant came to see us, to see Charlie, in fact room flooded with staff. It’s a cliché to say that what happened next is a blur, but there really is no other way to describe it. Chris and I remember it in bullet points, not as vignettes:
“He has diabetes.”
“He’s in DKA.”
“His skin is mottled.”
“He’s going into shut-down.”

I don’t recall how long it was before they told us Charlie was going to be transferred to Gloucester Royal. HDU were expecting him but they were waiting for the nurse to reach us first. Neither of us could understand why we needed another nurse – there seemed to be so many there already so we questioned it. I remember a nurse gently rubbing my arm and telling me we were waiting for a specialist crash nurse who would travel in the back of the ambulance with Charlie as he was blue lighted back to HDU in Gloucester. She had to be in the ambulance with us because she was trained to resuscitate. And there it was; Charlie was so poorly, they weren’t sure if he would make it from Cheltenham to Gloucester – about 8 miles.

Chris made some phonecalls to immediate family were told what was happening, or at least what we knew. As Charlie was put into the back of an ambulance, I had a text from my sister up in Leicester. “I can be with you in an hour”. I know I have many friends, and Chris’s family are my family now, but my parents aren’t around, there’s just the two of us. That message meant a lot.

At Gloucester, Charlie was taken immediately to HDU which is on the Children’s Ward. The ward itself was extremely quiet, it was early evening and visiting hours had finished. Paediatric HDU is just two beds, opposite each other. Seeing a bed in that environment, surround by tubes and machines all poised and ready to fire into action, is scary. The space at Charlie’s end had been filled not with a bed, but with a cot. Everything seemed to make him appear so much smaller, so much more fragile than his 15 months.

After Charlie had been settled in, laid out with various cannulas inserted, full history taken for what seemed to be the millionth time, hooked up to bags of fluid, and with everything beeping regularly around him, attention turned to Chris and I.

What strikes me most about every nurse we encountered during those initial few frightening hours, was just how tactile they were. Professional? Yes. Clinical? Of course. Knowledgeable? Immensely. But nothing expressed their empathy to us more than their uncanny ability to give us a reassuring rub on the back, to put an arm around us and squeeze our shoulders, right when we needed it. Each of them recognised us as worried parents, and they nursed that as diligently as they attended to Charlie.

The consultant was an old boy. He had an air of friendly village GP about him and not only explained in clear terms what had happened, but also put us at ease about it. He told us that Charlie had developed Type 1 Diabetes, meaning there was no function from the pancreas at all. Nothing. As an organ, it has failed, therefore, his body has zero insulin. As it had been undiagnosed, it had led to Diabetic Keto Acidosis, commonly known as DKA. Charlie would need a lifetime of care, but as a condition, it could be managed and, with respect to it, there would be no life-limiting impacts. He grew outraged when we relayed our advice from 111. Weeks after we came home, we received a copy of a letter he had written, in his capacity as a much respected, Senior Paediatric Consultant, to the operators at 101. He was scathing. He addressed the distress we had gone through, and demanded adequate levels of training be put in place before more lives were put at risk. He held nothing back. Chris and I were both comforted that someone else had fought Charlie’s corner.

And then there were Gill, Nicky, and Abitha.

Gill Gethin was a Specialist Paediatric Diabetic Nurse. She introduced herself to us at Charlie’s bedside, another friendly arm around our shoulders. She told us that at 15 months, Charlie was one of the youngest in the UK to have developed Type 1.Typically it presents itself in children around the age of 10. Gill saw us every day of the 10 days we spent in hospital that first time. She patiently guided us through how we would manage Charlie’s condition on a day to day basis; everything from carb. counting for his meals, changing and inserting a cannula for his pump, how to bath him with the new tubing attached. She explained absolutely everything in simple, layman’s terms and watched from a safe distance as we all found our feet. She showed us how to correct our ham-fisted mistakes and gave us space to digest the mountains of information we were given on a seemingly hourly basis. When we left the ward and came home, Gill came too. She helped us establish something of a normal routine for Charlie, chatted to Grace, made suggestions about where we could store kit, how to order supplies, where emergency help could be found. I remember telling her in the hospital that we had a holiday booked, in six weeks’ time. To me that felt like such a massive undertaking – adding a foreign country into the mix scared me to death. What if Charlie got sick while we were away? Gill’s response was to enthuse about the holiday, giving us something to work towards, to empower us (me) with the confidence needed to go. Her mantra was respect, not fear. Respect the condition and don’t be complacent, but never let it be a cage.

Gill visited Charlie’s nursery, familiarising herself, delivering training to a very nervous bunch of individuals and instilling the same confidence in them that she had in us to manage Charlie’s condition. A couple of them had been in touch to say that they should have picked up on the signs sooner, that they felt guilty; responsible even. When our reassurances that there was no blame fell on deaf ears, Gill came to our rescue again. Her matter-of-fact, no-nonsense approach delivered the absolution Chris and I fell short of.

When Charlie bounced back in to nursery two weeks later there were monumental hugs all round and, from that day forward, he appeared to revel in his rock-star status, charming everyone as he had done before he got sick. A HUGE thank you has to go out to every single nursery assistant who provided care for Charlie. They all mastered the skills needed to keep him safe. Without their enduring support, we would never have been able to establish some sort of normality in our lives. Chris and I were able to go back to work, Grace was back in her routine and Charlie was kept happy and healthy. Rocking around in the back of that ambulance a couple of weeks before, I didn’t think we would have a normal life again. Gill facilitated that and we are forever grateful to her for it. When she retired a few years ago she left a huge void, one that we feel has never comfortably been filled.

Dr Abitha has been our consultant since day one. It’s fair to say she scares us a bit. She analyses and reviews Charlie’s numbers, both in hospital and at our regular clinic. To be honest, I think she gets a bit frustrated with us. We try SO hard, every single day, to get it right. But the nature of diabetes is fickle, and what works on one day, will not necessarily work on another. Dr Abitha steers our course through all of these experiences, but she’s less of a guiding hand on the rudder, it’s more like she bangs the drum on a galleon! Our clinic visits with her often leave us feeling battered and bruised. But in short, we love her. Abitha encourages our engagement. In early visits, she would tell us, categorically, what rates we should be using, what correction factors, what his insulin sensitivity should be set to, what his carb. ratios should be. Today, it is much more of a negotiated partnership. As our knowledge of his condition has grown, Abitha has opened up the discussion about his treatment, given us options about the therapy he chooses and helped us seize control of the decisions we make regarding the condition. There are unceremonious arse kickings when she feels our approach is tentative but she’s also quick to praise us for the things we do well. Charlie regarded her with a very wary eye for a long time. He didn’t speak to her until he was five, not through shyness (anyone who has met him will know he is far from shy), but more likely due to a not-unfounded suspicion of her. She regularly poked and prodded him. Her abrupt and direct tone made him frown and button his lip. Now, they’re cool. I think he’s realised she’s not going anywhere and there’s less poking.

Nicky Dobbin is our therapist. Regular screening tries to ensure that parents and siblings are provided with adequate support. Caring for a child with a chronic condition or illness can have an enormous impact on mental health. A couple of years after diagnosis we were presented with our annual screening questionnaire. Our answers flagged up the need for additional support. I was struggling with anxiety. I don’t remember a time since Charlie was diagnosed when I haven’t been worried. Anxiety gave way to insomnia, restlessness, panic and a general, almost permanent sense of unease or foreboding. Nicky helped us unpack those fears and shone a light on anxiety. We only worked with her for a little under a year but her advice continues to help us. In particular she helped us with two things; Charlie’s transition from nursery to primary school and coping with surgery. Both scenarios were inevitable and both filled me with dread.

Charlie has treated us to a few blue-lighters and a couple of prolonged hospital stays. We’ve had hospital stays for all manner of things because even a mild illness can have a severe impact on Charlie. For example, D&V is inconvenient for any parent but losing fluids and being unable to keep anything down meant that we lost control of his blood sugars. Seeing Charlie in hospital is wretched and unfair. Chris and I are prepared for it, we have that bag packed in much the same way as a mum-to-be does, but it never gets easier. When we are discharged we joke about Charlie being granted parole, but it’s gallows humour.

In the early days he developed a heart murmur, aggressive eczema that covered his little body in sores, patches of vitiligo and an enlarged spleen. The greatest problems were his tonsils and adenoids. Both were huge, so much so that he was developing sleep apnoea but, worse than that, he was picking up so many infections. Any other healthy toddler would be able to shake these off. Charlie’s diabetic status meant they put him on his back, on a ward. The solution was to have his tonsils out but this wouldn’t be a simple op. He would need to have a specialist team, with surgery carried out in Frenchay Hospital in Bristol, not locally. There was also twice the risk of post-op. bleeding and/or infection. And that’s not even addressing the problems faced by him having a general. Or so we were told.

The reality was very different. Charlie breezed through it. We spent a couple of weeks at home afterwards to reduce the risk of infection but I think he was at greater risk from cabin fever to be honest, and there’s only so much ‘Fireman Sam’ a Mummy can take! As for going to big school, once again Gill was on hand. She helped the teachers and TAs develop a care plan with us, trained them to cope with Charlie’s routine of testing and instructed them in the mechanics of it all.

Chris and I felt very isolated. We knew no other parents with a diabetic child. Our friends and family, although supportive and caring, had no idea of the regime we adhered to or the strain it could put on us. It’s not their fault. There is a universal lack of understanding with diabetes as with any condition and unless you live through it or with it, that probably won’t change. There’s no nipping out and leaving Charlie with a baby sitter. Everything has to be planned meticulously, you can forget spontaneity.

Chris, in particular, felt a loss of control. He became fixated on numbers, and by God there are a lot of them. By nature, he is a fixer; he likes rational, logical processes. Diabetes is never predictable. There are general rules and principles that help us manage Charlie’s illness day-to-day, but there are SO many variables that affect Charlie’s blood sugars: food, illness, growing, activity, inactivity, stress, excitement, weather, heat, cold, shock, travelling, hormones, medicines, pod failures. Chris can’t fix this and I know that hurts him. Every day we strive to hit the right number and we never get it right 100% of the time.’

Claire, writing for The Mother Side xx

Pop back on Sunday night for Part Two of their story. In the meantime, further information is available on the Diabetes UK website, including this useful ‘mythbusting’ page.

 

If you are concerned about a child (or adult), or simply want further information about diabetes, these are good starting points:
Diabetes UK
Children with Type 1 (Parent to Parent support and information)
JDRF
Diabetes.co.uk
Diabetes Support (Facebook Page)
T1 International (Facebook Page)

And, if you are the parent of a child with diabetes, these closed Facebook Groups will be of interest:
HELP! We forgot T1 Kit! UK
CWD Dads UK

 

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4 thoughts on “How it Feels: A baby with Type 1 Diabetes (Part 1)

  1. Amazing blog and so hard to write I imagine. You and Chris are heros in our eyes, and to everyone who knows you. The thing I want to ring out loud and clear to anyone who doesn’t know this family is their strength. They have so much on their plate but will be the first to be at your side for anything you need and offer support at your time of need. They are happy, fun, caring and just bloody good eggs. Gracie is the most sweet, caring girl and Charlie is a whirlwind of …. well Charlie.
    Hats off To Team P.

    Liked by 1 person

  2. Your experience pre and post diagnosis mirrors ours exactly right down to the little details like “head resting on the shoulder” our son was 18 months old when he was diagnosed but it was 19 years ago, I find it incredibly disturbing that nothing appeared to have changed in the following 13 years when your child took ill. Our son is 21 now and living life to the full. Let’s hope children now so poorly have a quick blood test much sooner, it takes 30 seconds, to ensure they do not have to face the trauma of losing their child.

    Liked by 1 person

    1. Hi Jacky. Thank you for stopping by and commenting. It’s brilliant to hear that your son is living life to the full. The second part of Claire’s post has now published, if you haven’t already seen it xxx

      Like

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