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 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

Helen

xx

 

10 Comments

  1. Ali on March 23, 2012 at 11:12 am

    So very well written by someone who understands the battle we face! As a woman who is 6 months pregnant and also a T1 I have sent this blog to those closest to me in the hope they may understand a little better. thanks !

    • Helen Edwards on March 23, 2012 at 12:33 pm

      thanks for that comment Ali, it is something I think people don’t realise and it is great to hear your thoughts – good luck with the rest of your journey! 🙂

  2. Cass on March 29, 2012 at 1:46 pm

    … or, with a new bubba who just passed the 12 week mark, a post and idea for research so close to your heart and full of honest understanding that you sit and cry!

    Thanks Helen, and very best of luck with the research =)

    • Helen Edwards on March 29, 2012 at 2:53 pm

      thanks Cass – congrats on the new baby! I am excited as am narrowing down that it is likely to focus on type 1 diabetes and the course of diabetes related distress from pregnancy into the first 6-12 months of new motherhood (which nobody really looks at), so thinking I will be very connected and love the process. Good luck with learning about your new little person 🙂

  3. Erin-T1 on March 30, 2012 at 10:26 am

    Very beautifully and honestly written! It’s as though you were in my head! These were, and still are, the questions I think about…. thank you for bringing them to light, and for assuring me that I am not alone in these thoughts 🙂

    • Helen Edwards on May 12, 2012 at 7:59 am

      Thanks Erin. It is so nice to know people get you and I mean REALLY get you. Coz they are dealing with “dear diabetes” too.

  4. Orlando Chiropractor on June 25, 2013 at 6:09 pm

    Have you ever considered publishing an e-book or guest authoring on other sites?
    I have a blog based on the same subjects you discuss and would really like to have you
    share some stories/information. I know my subscribers would enjoy
    your work. If you’re even remotely interested, feel free to shoot me an e mail.

    • Helen-Edwards on June 26, 2013 at 12:45 pm

      Hi there, yes we have a couple of e books in the works! They will be out soon and also happy to guest author 🙂 let me know if you would like that, thank you for visiting and taking time to comment 🙂

  5. SallyMarchini on January 25, 2016 at 5:10 pm

    Thank you for the work you’re doing in this area Helen. I just wish this kind
    of information was available to me when I had my child 14 years ago.
    It’s also the ongoing fear that perhaps those less than perfect numbers
    will effect your child in the longer term. Will he be at greater risk of
    metabolic disorders himself? Who knows, but it does play on your mind
    when you love them so much. <3

    • Helen Edwards on July 10, 2017 at 10:07 am

      thank you Sally xx

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