Blog - Warrior Stories
Diabetes and Pregnancy with Dexcom Warrior Niki
Having gone through three pregnancies with type 1 diabetes (T1D), Warrior Niki* tells us about her experiences, what she’s learnt and how she uses the Dexcom G6 Continuous Glucose Monitoring (CGM) System to help her manage her glucose levels during this critical time.
Meet mum of three, Dexcom Warrior Niki*
Based in Northamptonshire, Niki is a 42-year-old wife and very happy mum to three young children. In her spare time (which she doesn’t get much of), she works on her advocacy efforts where she’s currently focused on the Language Matters Diabetes and Pregnancy campaign and supporting others through pregnancy and parenthood with diabetes.
She loves being outdoors and cooking for her family, planning home renovations and taking sneaky trips to Cornwall. She’s always writing and reading something, and challenging things that can lead to better experiences for those who come after her - mostly her babies.
1. When and how were you diagnosed with type 1 diabetes (T1D)?
I was initially misdiagnosed with “a touch of diabetes” by my GP in 2001. Later that year, after a hospital admission, I was moved to insulin. However, it was in 2015 that someone actually said to me “you have type 1 diabetes”. Prior to seeing my GP, I had felt thirsty, tired, lost weight, using the loo like it was going out of fashion and I had thrush repeatedly, many of the typical first signs of diabetes.
There was a mental impact to feeling so unwell and I would definitely say that I was depressed when I saw my GP. I was just 20 years old and left the GP with an A4 sheet of paper having been told it was probably type 2 diabetes because of my age, weight and lack of family history. When I was moved to insulin, it was with a set dose of human mixtard and no education.
2. What steps did you take to manage your T1D (prior to pregnancy)?
I knew I wanted to be a mum my whole life. So, when I met Matt and we knew we were in a place to start a family, I began taking 5mg of folic acid. I had always been open with my diabetes team about wanting children and was fortunate that they’ve always been supportive. My HbA1c when I fell pregnant perhaps wasn’t in the preferred range, but it wasn’t so far out that there were concerns.
All my pregnancies have been prepared for, but unplanned in the sense that I wasn’t able to access formal preconception care. I can remember not long after diagnosis, asking my consultant if I would be able to have babies, and he told me I shouldn’t even be thinking about it “with an HbA1c like that”. This would’ve been a perfect opportunity to start my preconception care by talking to me about periods. But he was a much older “boys club” type of consultant and I imagine the last thing he wanted to do was talk to me about my menstrual cycle, but it would’ve given me so much more knowledge about my diabetes.
3. Were you worried that T1D would affect your pregnancies? What were your fears?
Initially my fears were all the usual, stigma filled inaccuracies that are banded about inconsiderately. I was worried about having a large baby, a poorly baby, about the mode of birth, about sudden onset diabetes complications and hands down one of the biggest fears for me, not being able to have babies at all.
Once I was bit more educated, I felt that a lot of the information is based on risks, and I had a choice at that point to worry about those risks or be aware of them and attempt to do as much as possible to mitigate them. By the time becoming a mum was a reality, I had an amazing diabetes team and a peer support network that showed me their actual lived experiences.
4. Do you feel they’re enough educational resources out there for pregnant women with T1D? What would you like to see more of?
I think it’s improving thanks in part to the work of some wonderful advocates sharing their experience, and JDRF in particular are doing some great work on their resources. But there is always more work to be done to ensure there’s a balanced approach to how those resources are presented. When I heard from people who’d been told not to have babies because of their T1D, part of me saw that as a challenge to change the narrative around pregnancy and diabetes, to bring more lived experience to sit alongside the research and experience of healthcare professionals (HCP). We often talk about empowering patients to make informed decisions around our care but getting that balanced information is still not straightforward.
With the Language Matters Pregnancy and Diabetes work I’m doing, I hope we can see HCPs presenting the reality of pregnancy and diabetes in a more mindful, balanced and less risk laden way. Risks are important to consider, but they are not forgone conclusions and we need to be reassured that they also exist for those without T1D. I would like to see lived experiences of diabetes and pregnancy given more of a spotlight on conference stages and in publications. I would also like to see preconception care starting when talking about periods and sexual health, proactively from diabetes teams with both boys and girls.
5. Was there a difference in how you managed diabetes during pregnancy? What were these?
Knowing one day I wanted to be a mum and very much led by anxiety of not quite knowing what I was doing when it came to my diabetes (lack of education), I’ve always been a micromanager in an attempt to avoid issues. So, pregnancy was no different in that respect and I think emotionally I was kinder to myself because I wasn’t having to guess the reason for the random resistance of the persistent hypos.
I did have hypremisis gravidarum alongside a lot of food aversions, so I needed to alter my diet and the way I bolused for food with the awareness I might not keep it down. I did become a lot stricter with pre-bolusing but I found that using temporary basals and extended boluses for meals helped negate many post prandial spikes.
Learn more about bolus and basal insulin by reading our blog article on Types of Insulin and How to Use Them.
6. Was there a difference in how you managed diabetes prior and post pregnancy? What were these?
I definitely eased off a bit post pregnancy because I had tiny humans to distract me, but the primary thing was how rapidly my insulin needs dropped. Over three pregnancies I’ve gone from returning to pre-pregnancy basal rates to going to an even more reduced basal rate immediately post birth because there will be hypos!
And I chose to breastfeed, which meant for me that my insulin needs were also much lower. The motivation switches from giving the baby the best growing environment to keeping things safe so you can be there for them once they’re born and after months of insulin resistance, hypos suddenly feeling very unsafe but also, during this time your hypo awareness can change. I’d have pockets of hypo treatments anywhere I would sit down with the baby and there were weeks when my basal was basically 1 unit per hour.
7. When did you start using CGM? Has it been a helpful tool in managing diabetes, especially during pregnancy?
I began using CGM after my daughter was born because my hypo awareness wasn’t as good as it was prior to pregnancy. It took a while to return, but by the time I was able to access it, I was already pregnant with my eldest son. So, I began just before the NICE guidelines were updated for everyone with T1D to be able to access CGM during pregnancy. It definitely made it easier, and as I was pregnant with Felix during the first wave of the pandemic, it meant the remote conversations with my HCPs were much easier to have too.
When I was able to use the Dexcom G6 CGM System in my second pregnancy, I noticed a huge difference to the way I analysed my data and could be far more proactive at spotting trends and adjusting things accordingly, especially with some of the quicker changes that happen during pregnancy.
8. What were the biggest challenges with being pregnant with T1D?
Stigma and other people’s expectations and beliefs aside, I think the pressure associated with target blood glucose (BG) ranges and a certain HbA1c. We’re constantly reviewing data by ourselves and can become hyper fixated on the only time our BGs were out of range and whisk that up into a meringue made of fresh air.
Looking at Time in Range has been a much more logical way for me to review data and remove a small element of that pressure. Looking back now, I think the sense that my pregnancies were different to other people's I was going through antenatal classes with was hard. Knowing my experience would be more medicalised and planned and not having much in the way of in-person peer support was really difficult and is something I know is hopefully in the pipeline of change.
9. Did you have any ‘scary moments’ during your pregnancies (associated with T1D)?
Mostly things like cannula failures leading to stubborn highs, which carry far more pressure during pregnancy of course. There are always points when a hypo hits or your resistance changes later on in pregnancy and you monitor it more intensely than you normally would, whilst checking kicks and questioning if everything’s ok with the baby. Getting monitored at the hospital is so straightforward and they’d always rather you go in and have your mind put at ease. I did develop pre-eclampsia during my third pregnancy, but there is no way of knowing with any certainty if that is related to my T1D.
10. How do you use your platform to educate about diabetes? What is your core message in regards to living with T1D (especially during pregnancy and as a mum)?
I’ve found using social media has helped me connect with not only others who live with T1D, but healthcare professionals, researchers and organisations working to make a difference to those of us living life with T1D. I find these days I don’t share much about life with T1D publicly because all the connections I’ve made are keeping me busy offline and with one-to-ones.
I’ve been really fortunate to support around 170 of my peers during their pregnancies or parenthood journeys in the last 6 years, and I still get the privilege of being part of that journey. It's amazing to be able to give back some of the support I was able to access when I found the diabetes community. What really excites me is that through so many people sharing their own experiences, I’ve been able to develop how I advocate and communicate about pregnancy and T1D to be truly reflective of the community. It has often reinforced ideas I’ve had of where there can be improvements or changes and to reach out to people who could help make those ideas a reality; whether that’s research or policy or the way a service is delivered, and of course, with the Language Matters work I’m now focused on.
11. From your personal experience, what advice would you give to other women with T1D who are pregnant?
I could probably write a book by now! Firstly, build a team around you who will support your journey and who empowers you to lead on that. If you don’t feel that’s your current diabetes team, know it’s ok to change teams. Include community in that, there’s a wealth of lived experience resource all over social media and people who will be happy to answer questions or offer some reassurance, signpost you to resources and let you know what to expect.
Secondly, put things in place to support the emotional impact of pregnancy with T1D. It can be really full on and there is a higher risk of experiencing diabetes distress down the line. During pregnancy, speak to your local perinatal mental health team alongside your diabetes team and keep talking whenever you need to. Make sure those around know the signs you might be struggling and empower them to raise concerns with you.
In terms of pregnancy itself, do as much as you can to ‘normalise’ (I hate this word) the experience. Have the baby shower or the gender reveal party or simply enjoy a babymoon with your partner and shopping for baby things, using the nesting period to reduce your insulin resistance during the third trimester. Embrace the joy this time carries because it’s so easy to get caught up in the worry other people might try to project on you.
Lastly, don’t lament the birth plan! Every labour is different and it’s important to manage your expectations, be fully informed and empowered with your birth choices, but be open to the process of birth, whatever mode that is by.
Do you want to become a Dexcom Warrior, like Niki?
The Dexcom Warrior programme is designed to help spread the message of strength and optimism for people living with diabetes. Warriors include thousands of people all over the world who are inspiring others by living their best lives and sharing their stories about their personal experiences.
You can also learn more about using CGM, like Dexcom CGM Systems, during pregnancy to help you manage your glucose levels during this critical time.
* Niki is a sponsored spokesperson for Dexcom.