Understanding the journey of pregnancy for women with type 1 diabetes

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 post natal period. 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 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, still born. I have heard many other women over the years talk about similar experiences.

Some of the questions I want others to understand are what is it like to be a woman with diabetes who does not “plan” her pregnancy and has to go and tell the health care team that? To see their faces sitting in judgement of this lack of thought about pregnancy? To 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, knowing every piece of food you put in your mouth may not just nurture your growing child but may cause damage as the blood glucose levels react? 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 try and breastfeed when your milk is slow to come in and the nurses want to give you baby a bottle but you really don’t want to do this? To go home after intense medical support, to none?

What is it like as a new mum to have diabetes that is so out of control you sit and cry, with a baby that you do not know how to care for yet so you sit and cry, the lack of sleep and constant struggle to stay awake making your health suffer, so you sit and cry, realising the reality that trying to have a good diabetes routine with a new baby is impossible – so you sit and cry.

Does the increased distress of managing diabetes during all of this lead to a higher chance of post natal depression? And even less studied – how about the next year or so? 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 – and this led to me creating the Diabetes Pregnancy Pal App, which gathers all the important information from pre pregnancy to motherhood in one easy to navigate App – You can grab the App below.

I will be looking at the App, testing and evaluating it, and considering a version 2 in this next stage so stay tuned. I have also learned there are particular things health care professionals need to do to help make the journey easier, and how critical support from other women with diabetes is – our facebook group has shown that and you can join us here https://www.facebook.com/groups/pregnancyparentingdiabetes/

I am hoping that as I return to this research that at the end of it we can find some ways to make this amazing, special, scary and beautiful time in the life of a woman with diabetes more about her journey as a Mum, and less about her journey as a woman who happens to have type 1 diabetes.

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

Helen

xx