This is the talk I gave at TAD on Tour when it came to Oxford back on 20th June 2019.
Before I share my talk below, I would like to start by extending a huge Thank You to the other speakers, Amy Stevens & Quentin Valognes and our Compere Shivani Misra who all did an incredible job of showing their passions for changing the conversations around Type One Diabetes to make life better for us all. I would also like to thank Dr. Partha Kar and the rest of the team responsible for making TAD and subsequently, TAD on Tour come to life and for giving little old me the opportunity to speak about my experiences. Sam from Novo Nordisk, you did an amazing job of coordinating the week whilst also being on a cycling event across the UK.
There were 4 events across the UK in total, if you head to twitter and search #TADonTour you’ll be able to see all the speakers and reactions.
Good Evening, Everyone, My Name is Niki and my life with Diabetes began when I was diagnosed with “just a touch” of it or Type 2 Diabetes in 2001 at the age of 20. We had a rocky beginning to our life together; eventually the “marriage counselling” came in the form of a severe DKA admission later that same year. I was then, for want of a better word, reclassified as “probably a type 1” and started on insulin injections. Naturally, that experience alone took its toll in ways in which it feels surreal and wonderful to say, “I’m sure you all understand”.
I didn’t have much advice or reassurance from the Diabetes Team I was initially assigned to about the impact this condition would have on my life, on my future; let alone the future I’d dreamed of for myself. The one where I meet the man of my dreams, have babies and maybe find ourselves a home with a view of the Atlantic ocean, nestled in the Cornish Countryside, where I can write best-selling books whilst raising our children and of course enjoying the fare on offer from Pasties to anything that goes nicely with or can be made from clotted cream (but always jam first please and thank you). There were no conversations about being a young woman with Type 1 Diabetes, managing hormones, or the way a menstrual cycle can change your insulin requirements so drastically.
As a 21-year-old, I recall asking my Diabetes consultant about pregnancy after someone had told me “Diabetics have giant babies and they end up being very poorly so you probably can’t do that”. I asked the question from a very emotionally vulnerable place and whilst waiting for my possibly near retirement age consultant to respond, it was almost like being in a state of anticipated grief, I feared I was about to experience the first shattering of a dream I’d kept safe and close since playing with dolls as a child.
The response I got from this man was a dismissive “with an HbA1c like yours I wouldn’t even consider it”. For perspective, at this point, I was less than a year into my life with diabetes, had received no education and was navigating these tempestuous waters mostly alone. My only option at that time to get answers or education seemed to be library books or hearsay, basically the equivalent of asking Dr Google, and we all know what a risky move that can be.
Fast forward 15 years or so and I’m very much being cared for by a new Diabetes team and through working with them and being inspired by a dear friend, I’ve now connected with a community of other people living with different types of Diabetes. I’ve discovered the information available from Diabetes UK and JDRF; particularly around pregnancy and spoken to actual people who have had actual babies who weren’t giants and are healthy and exquisite and everything you want for a baby to be. And I’ve spoken to Mothers with the same condition as me, treating it with the same medications who grew those non-giant babies and are still here to tell the tale and are being the most amazing mothers to their children. I had some education, some emotional support, and a proper insulin to carb ratio which felt like a whole new version of the “normal” I’d once known but there was still a specific something I needed to know.
I hadn’t dared ask the question again over the prior 15 years, not properly anyway, I’d tuned out had the subject come up fearing I wouldn’t like what I would hear. It was my way of trying to keep hope safeguarding my dreams. Having built up a relationship with my team that was based on mutual appreciation; me for the study and dedication they have shown to be able to advise and guide me and them (as they constantly remind me) for my “putting all the hard work” into living as well as I can with T1D, I thought I’d give it another go. Like a child desperately wishing for a new puppy and scared that the answer from her parents will be an immovable no I braced myself and tentatively asked; “What should I be considering when thinking about pregnancy?” The very same question I had asked over a decade ago, thankfully the answer was not the same.
The answer spoke of preparation, of 5mg Folic acid, of it being hard work but worth it, the response spoke of the positive outcomes I had myself heard of through the Diabetes Community, it even included a “Does your partner know about this?” promptly met with, “he will when I meet him!” an exchange which made the entire experience more human, normal. I asked about the optimum pre-pregnancy A1c, at somewhere around 7% mine wasn’t that far out and I was reassured that this, paired with the way I manage my own Diabetes, wouldn’t be a massive hurdle if a pregnancy were to be imminently on the horizon and that the support to prepare was there when the time came. Knowing motherhood might be possible one day was like a big pat on the back for the hope I’d maintained.
In 2016, I met the man of my dreams (he’s actually better than the one I dreamed of but perhaps don’t tell him that), and in September 2017 we found out I was pregnant. My pregnancy wasn’t planned and the only preparation I’d done from a Diabetes perspective was to take the 5mg of folic acid because I’d been advised by a GP to take it for up to 6 months before trying for a baby, we’d originally decided to do that at the beginning of 2018; Moomin had other plans.
Knowing that I was pregnant made a huge difference to how I felt about the extreme variance in insulin resistance in comparison to the usual day to day with Diabetes. It was liberating to not have to play detective to work out the mystery reason for the unexpected high or the persistent low…. although of course there was still some occasional randomness to keep me on my toes. From the moment I found out I was expecting the Mumma Bear in me was born. Prior to pregnancy, I’d been a micromanager of my T1D anyway, now I had a much healthier obsession with it. Don’t get me wrong, it was exhausting but the little life inside of me was so motivating, it was hard to find reason to complain when I was so grateful.
I’d spent more time than I’ll ever admit to myself wondering if I’d be able to experience the things most expectant mothers do. I know it probably sounds daft but there were genuinely days where I had conversations with my T1D begging it not to make my pregnancy any different because of my lazy pancreas. I’d watched my sister, and friends enjoy their pregnancies with all the trimmings and it felt important to me that I was able to experience as much of that as possible. I felt it would balance out the need for closer monitoring, the additional appointments (although the extra scans were really quite a treat) and the way in which Moomin would come into this world.
In the First Trimester – Morning sickness. Hula hoops, apples, fish pie, and pasta were about the only things that were palatable. I couldn’t even drink tea to console myself. (I’m a BIG tea drinker). My insulin resistance was huge between weeks 5 and 11 and the only way I was able to have lunch without spiking ridiculously high was to have an increased basal set for the hour in which I had lunch, and the 30 minutes either side of it too. I would eat the same thing every day and I would pre-bolus by 1 hour and 15 minutes AT LEAST. I felt exhausted and elated and I struggled not to scream our news from the rooftops.
Some favourite moments from the first trimester for me were obviously the first few scans, I can’t describe the feeling of seeing your child growing inside you; needless to say, I fell more in love with each peek. Telling my family, we gave my dad a birthday card from Moomin and I can still remember the look on my Mum’s face when she worked it out as it was still sinking in for my Dad. Learning about the SUPERBOLUS…. seriously, it was like I’d been living under a rock! Returning to the place where Matt and I met, talking about bringing Moomin there one day and finding him on one knee offering up a lifetime together and ring that’d been months in the making. Realising that by the time I got to the end of this trimester, I’d kept Moomin alive and growing beautifully whilst finding ways to proactively manage the changing demands my T1D was throwing at me.
I can’t tell you whether it was knowing what I was doing (or rather feeling like I did) but I felt things ran a little smoother during the second trimester from a BG point of view. I was no longer feeling sick, although there were moments of nausea…. these were mostly when I tried to see if I could drink tea again yet. Because everyone knew, I didn’t have to say yes to a cup of tea, let it go cold and pretend that wasn’t intentional anymore. I can’t tell you how stressful that was, have I mentioned I’m a big tea drinker? Even having Christmas dinner at a hotel and guessing carbs went well, I really felt I had this Diabetes and pregnancy thing nailed. Moomin was growing steadily, right down the middle of the centiles and it’s the only time in Moomin’s life where average is a word I was thrilled to associate with our child.
My undeniable highlight of trimester 2 was feeling Moomin move for the first time. As a family, there was 1 stand out rough day for us all, really rough, and it was this day that my darling let their presence be known. I was around 18 weeks and it felt like standing next to a really big speaker as the bass kicks in and you feel it as a physical sound… I hope that makes sense. Moomin was telling us all that everything was going to be OK.
The third trimester was a rollercoaster of so many things, and my BGs were no exception. For me, this trimester was more about being reactive because even though I couldn’t see them; my T1D was keeping me on my toes. It was an extreme version of every day with Type 1 Diabetes and at this point, I could do without it. I wanted to nest and do all the Mumma to be prep that our NCT friends were doing. Instead, I was adjusting basals and carb ratios, injecting Fragmin, watching the spread of an itchy pupps rash and I could barely move because my bump was huge and I was carrying quite low. I was consoled by seeing, as well as feeling Moomin move frequently, the gorgeous sunshine we were having helped too. Even from inside.
This trimester was when I appreciated the support I got from my team the most, we were approaching the really scary bit…the bit where the baby needs to come out somehow and once again the way in which I managed the varying insulin needs was going to have an impact on how well that went and above all, how Moomin was at birth. It was nice to know that the crippling fear I had about aspects of this were completely the same as most first time Mums. I was concerned about having to have an emergency C-section and there being a need for a general anesthetic. I didn’t want to miss those first precious moments of my baby’s life. What if I couldn’t drink tea again? What if the induction didn’t work? What if Matt wasn’t able to stay with me and missed the birth? Had I done enough to keep Moomin out of HDU?
At every antenatal clinic, the consultants and midwives would give me time to air any concerns or ask questions, and I presented my list and got all the reassurance and information I could ask for. I was taken through the induction process, I was assured that a C-Section under a general anesthetic is very rare and there is usually time for a spinal block if there’s no epidural in place. I should be able to drink tea as soon as Moomin arrived and Matt wouldn’t be sent away at any point once the induction process was started. Moomin had a good strong heartbeat, was growing nicely and giving no reason for concern, but there would be a wonderful team on hand who could take care of Moomin if that were needed. We talked about how my blood glucose would be managed throughout labour and decided that I would leave my insulin pump on for as long as possible and with the help of the Libre, which Matt could be in charge of, we’d all have a full picture with which to make decisions in situ.
By the end of that appointment, I knew the date I would be induced and I resigned myself to the mindset that no pregnancy, labour or indeed parenthood were predictable, anything could happen. Just as someone without Diabetes could have a 10lb baby, someone with Diabetes could go into labour naturally and early. There was so much more about the experience of pregnancy that was, put simply, “normal” that it felt empowering. As people living with any type of Diabetes, we often strive to emphasise that this doesn’t stop us doing most things that anybody can do. Pregnancy is and should be no different.
Induction didn’t work for me, and after 36 hours of my body trying to go into labour and a rather graphic hypo right before the epidural; Moomin arrived through the sunroof at 10.20pm on Tuesday 8thMay, 2018. As I had maintained throughout pregnancy, we were now the proud parents of a beautiful daughter.
She weighed 7lb 8oz – not a giant.
She was healthy as an ox at birth and still is.
My Body definitely CAN do pregnancy!!
After being asked to speak at TAD5 (the one with all the covid cancellations), I went on to take this speech really seriously and fell pregnant with our Son. He was also born weighing 7lb 8oz.