4 Mothers, 4 Questions (Part 2)
Continuing this 4 part series, today we meet Jenni Cipriani, a full-time mother (a.k.a. Superhero Jack of all Trades) from Thornbury, near Bristol in the UK. She shares the story of when her son, Bradley, was diagnosed with Diabetes mellitus Type 1 at just 14 months old and what we can do to improve the current diagnosis process.
What is your child’s diagnosis story?
It was 18th September 2010, when Bradley was diagnosed with Type 1 Diabetes. He was just 14 months old. Leading up to that day, I had noticed that Bradley was losing weight, sleeping in longer in the mornings and suddenly napping during the day for hours (when he wouldn’t normally nap at all). He was raiding the cupboards for food straight after I had fed him but he wasn’t gaining any weight at all, he was also very constipated. Looking back, I know now that the most obvious sign was how much he was drinking, he would gulp down beakers and beakers of water. In the mornings he would wake up absolutely drenched in his own urine; his nappy full to the brim and his pyjamas soaking wet. At the time, it was very easy to find an explanation for everything: he’s tired because he has just learnt to walk, he’s hungry and thirsty because he is more active and that must be why he is losing weight, his nappies are wet through because of his increased thirst etc.
But on the morning of 18th September 2010, Bradley’s health deteriorated. His breathing had become very laboured, he was drifting in and out of consciousness and he had a sweet smell to his breath. My Dad and I couldn’t wait any longer for the call back from our GP so we took Bradley directly to our local A&E department at the hospital. There we explained his symptoms and sat down to wait, but within 5 minutes someone came to get us. Bradley was ushered into a room where they tested his blood glucose levels straight away. The results came back: 29 mmol/L (a non-diabetic person is between 4.0 to 6.0 mmol/L), and that was when they told us he was a Type 1 Diabetic. Subsequent testing discovered that his ketone level test was around 7 mmol/L, whereas a normal person will be under 0.6 mmol/L (above 3.0 mmol/L is ‘a dangerous level of ketones which will require immediate medical care’). At which point we were rushed to Bristol Children’s Hospital in an ambulance where we stayed for 4 nights.
How did you feel when you heard the diagnosis ‘type 1 diabetes’?
I am embarrassed to say that I was relieved upon hearing he had T1D. Not because it was a good thing, but because I had no idea what it entailed and I was just relieved I had an answer as to why he was so poorly. I remember a couple of children (back when I was in school myself) who were T1D but all I really saw was that they carried extra food like biscuits. I also knew they had injections but to what extent, I was clueless. Once we got to Bristol Children’s Hospital and the doctors and nurses started talking to me in detail about Diabetes mellitus Type 1 (T1D) it was then that it really hit home, and it hit me very hard. I could not believe that this was going to be my son’s life from now on. I struggled to accept he would need 4 or more injections a day, bi-hourly blood glucose testing or an emergency box kit in our fridge door containing glucagon just in case he fell unconscious from a hypo. All I wanted to do was wake up from this nightmare, but that couldn’t happen, this was our new reality, this was his life now. Instead, I put my fears aside and tried to take it all in; I listened in great detail to everything the doctors and the diabetes specialist nurses told me. When they asked if I wanted to try and do the first injection I said ‘yes’ and just got on with it for the sake of my son, I knew I needed to be strong for him.
In your opinion, how could improvements be made to the diagnosis process in future?
Whilst some parents end up visiting a GP before the symptoms deteriorate, many don’t. This is largely because the symptoms come and go over a fairly long period of time, and they don’t all present themselves together until right at the critical point. So, like many other parents, I did not have any contact with a GP about Bradley or my concerns until the day we ended up in A&E. That means the actual diagnosis process for us was very quick. That said, the A&E nurse knew to take a blood glucose test immediately and I do think that more routine tests in GP’s when children present with at least one of the ‘4 T Symptoms’ (tired, toilet, thirst and thinner) would be an ideal way to stop misdiagnosis and catch it earlier and thus not once the person is in Diabetic Ketoacidosis (DKA).
If you could share one piece of advice to other parents around the world, what would it be?
Make yourself aware of the symptoms of TD1, the 4 T’s (tired, toilet, thirst and thinner). If I had known these then I would have taken Bradley to the doctors a lot sooner. He had slowly been losing weight over a period of about 2 months and he would not have been as poorly as he was at diagnosis. It was heart breaking for me to see him so ill and if I could have prevented that by knowing the symptoms then I would have. Nowadays, it’s something that I try and make people aware of in my network.