In this blog for people with diabetes who are contemplating pregnancy and the healthcare professionals involved in their care, Emma Doble, who lives with Type 1 Diabetes and gave birth for the first time in 2020, reflects on her pregnancy journey. She highlights the importance of technology and shared decision-making, and calls for better postnatal care for women with diabetes. Featured image: Power of Inclusion by Shanali Perera*
Pre-conception planning: taking control and minimizing risk
As someone who has lived with Type 1 Diabetes since the age of 4, having a baby was always discussed as something full of risks, worry and uncertainty. Despite this I had always known I wanted to have children and wanted to ensure I did everything I could to minimize risks. Before falling pregnant I spent a couple of years working to get my diabetes management as good as possible. This had involved getting an insulin pump and taking part in preconception counselling. When getting that positive pregnancy test, I felt comfortable that I had the tools to manage my diabetes as best as I could and that I was prepared for the journey, as much as possible.
During pregnancy: the role and importance of technology
During my pregnancy I was able to get a Continuous Glucose Monitor (CGM) which measured my blood sugar levels 24 hours a day. Having this, alongside my pump, meant I was able to achieve very tight control of my blood sugar levels throughout my pregnancy which was very important for the health of my baby. I worked very closely with my diabetes team uploading the results from my pump and CGM for them to review and suggest adjustments regularly. It was very reassuring to know that I could make changes quickly as my pregnancy progressed and that they were keeping a close eye on diabetes management.
A recent James Lind Alliance (JLA) Priority Setting Partnership identified exploring how diabetes technology can be used to improve pregnancy for both the baby and mother as a research priority. I very much welcome this as technology made my pregnancy journey much smoother and allowed me to manage my diabetes as effectively as possible, despite all the challenges and changes.
During pregnancy and labour: the ups and downs of shared decision-making
Another priority identified within the JLA partnership is how to enhance the choices and shared decision-making of women with diabetes during pregnancy and giving birth. This is something which was very mixed in my experience. During my pregnancy I had worked with my diabetes team closely through lots of open shared decision-making and planning. This included discussion about my options for labour. I had always thought I would have to have an early induction, or c-section rather than being able to wait for labour to occur naturally. I was doing some research about my options and found a Cochrane ReviewCochrane Reviews are systematic reviews. In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research., Planned birth at or near term for improving health outcomes for pregnant women with pre‐existing diabetes and their infants, exploring this exact question. Unfortunately, it was an empty review with no eligible studies included, but it did prompt me to have the discussion with my healthcare team. They explained the potential harms and benefits of inducing labour at 37 weeks and we decided together that it would be best to take that approach.
During my pregnancy I also worked closely with my team through shared decision-making to create a comprehensive plan of my wishes during labour. One of the things which worried me most during labour was handing over my diabetes care to the hospital team. I worked closely with my team to create a clear plan on when and how I would be able to continue to manage my diabetes myself and when the medical team would take over or support me. Once in hospital and with the start of my induction however I quickly realised that the team at the hospital were not aware of the plan I had made. I was left to manage my diabetes by myself during my induction and throughout my emergency c-section. I felt all our planning had been ignored and was worthless. This didn’t help my trust with the health professionals or feeling like I had a voice during giving birth which is something that now worries me for any future pregnancies.
After giving birth: a lack of diabetes care and support
During my postnatal period, diabetes naturally took a back seat, but there had been no planning on how I would manage my diabetes as my body adjusted. This meant I had many hypos which was very difficult during my first few weeks as a new mum. Postnatal care and support has also been identified as a research priority by the JLA priority and I would like to see postnatal care being treated in the same way as preconception support by having a clear pathway of care, specific support and guidance for new mums adjusting and more regular contact for this challenging period.
In general, research on pregnancy and diabetes has focused on the managing of blood sugar levels during pregnancy and the complications or harms. These are very important and have supported expectant mums’ access to technology which can make pregnancy a much more enjoyable and achievable experience. However, much more work needs to be done to support women’s preferences and choices through ongoing shared decision-making and access to postnatal support.
What I want health professionals to know
- It is important to provide open communication channels with people with diabetes who are also pregnant
- Ensure you are able to share insulin pump and CGM results remotely and plan regular times to discuss these
- Take time to discuss all of the available options for labour and record the woman’s preferences
- Supporting a woman after labour is vital to ensure her diabetes is not forgotten. Plan time to discuss postnatal diabetes management
Questions to ask your midwife and diabetes team
- What technology is available for me when I fall pregnant and how will I be supported to use these during my pregnancy?
- What are my options for labour including induction and c-section? What are the pros and cons of these?
- How will my diabetes be managed during labour? Am I able to keep my pump/CGM on to manage my diabetes myself during labour?
- What support will I get after giving birth to manage my diabetes?
Emma Doble has nothing to disclose.
*Featured Image: ‘Power of Inclusion’ is by Shanali Perera, a contemporary artist, educator, activist, retired Rheumatologist, living with Vasculitis. She works across the intersections of art, health, medical education and patient support: https://www.changinglanes.me/
**Of her work Roller Coaster, in which she uses insulin bottles on glass, Jen Jacobs says “Living with diabetes is like riding a rollercoaster. There are physical highs and lows (blood sugar and insulin), and emotional highs and lows.” Jen uses diabetes supplies to tell her stories. You can see Jen’s work and read more at www.diabetesart.com.
Read all of the blogs in our ‘Living with Long-Term Conditions’ series.
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