I wrote this post a while ago when I was starting my PhD. Having just had some time out and starting back, I decided to refresh the post, because I think understanding the journey of pregnancy for women with type 1 diabetes is so very important. So important that it is the topic of my PhD. The topic of my research is looking at the pregnancy journey and in particular, diabetes distress and depression for women with type 1 diabetes during pregnancy and the postnatal period; and how we can make this better. As a woman with type 1 diabetes who has had 3 babies and 4 pregnancies, I hold this topic most dear to my heart. I have my own experiences, but I want to understand what this is like for others. I have just launched My Diabetes Pregnancy as part of this – head here for the website and social media pages.
I was told as a 12 year old girl that I may never have babies and that if I did they may be deformed, large, troubled at birth and worst of all, stillborn. I have heard many other women over the years talk about similar experiences. In this next part of my PhD work I am looking at ways we can develop better services to support and educate women with pre-existing diabetes, well before considering a pregnancy, because we know this makes such a big difference. How to support healthcare providers to offer gentle support, that informs of the risks but celebrates the positive, and that can help all women with diabetes to plan well; and how we can create community and information that is easy to access and use when needed.
Some of the questions I want others to understand are what is it like feel the anxiety increase as you embark upon the most important journey of your life? What is is like to go through 9 months of sudden hypos, swinging highs? To feel each time you see a result on the BGM that this is not about just about you anymore, it is about your baby. For the growing child inside of you to become attached to the numbers on that machine? To wait to see scans and tests showing if your baby is growing ok or not? To be poked, prodded, weighed, measured, pricked, tested, judged…….
What it is like to be stuck between being a mum to be and a person with diabetes? To want desperately to linger and luxuriate in the pleasure of pregnancy, but want it to hurry as fast as possible to get through this time? To have less control over your birth choice? To have your baby taken to a special care nursery with low blood glucose levels and feel like this was your fault? To go home after intense medical support, to none? What is it like as a new mum to have diabetes that may be so hard to manage, with a baby that you do not know how to care for yet? Does the increased stress of managing diabetes during the journey lead to a higher chance of postnatal depression? How does a woman with diabetes manage her own health and the first year of her child’s life? What is it like to be a Mum and a person with diabetes? How do you handle a hypo with a screaming baby? These things and more are what I want to take time to look at and explore. I have already discovered in my first part of the research that women go through a journey that is both similar and different to those who don’t have diabetes, that there are particular things that help, and those that don’t. You can read my first paper about the research here.
Now, I look forward to developing tools that can be used to support women with diabetes and their healthcare teams to better outcomes for us all.
Are you a woman with diabetes who has been through pregnancy? I would love to hear about your experiences so please share in the comments