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May 20 / Caro

Diabetes Care Decisions

I’ve been going to the same diabetes centre for almost 12 years. I transferred there as a twenty year old student when I hit a brick wall with my previous doctors about transitioning to a pump.

They not only got me up and running on my first pump, but they saw me through my entire twenties. They took care of me through my battles with non-diabetes related health issues and helped me come out the other side. They saw me qualify as a dentist and turn from student to professional. They’ve seen literally hundreds of highs and lows, and everything in between, with me.

As a twenty-something woman, pregnancy was a bit of a recurrent theme at regular review appointments. In particular, the importance of not letting it happen without proper planning and of course the advice that if I should fall pregnant, I should tell them straight away, almost even before I told my partner!

In the event, I didn’t tell them quite that soon. Ian was with me when we did the pregnancy test, and both of our sets of parents heard the news straight away. But I did have an appointment the morning after my positive pregnancy test, and so my doctors were the next people, and the first non-family, to know. I was happy, sitting in that waiting room, waiting to share good news, wondering which familiar member of staff I’d encounter first. And when I went in to the consulting room I almost bubbled over. Everyone was happy for us too. They did another pregnancy test and concurred that yes, I was very definitely pregnant. And with a diabetic pregnancy, that’s when everything kicks in to high gear.

Or at least, it seems to. Suddenly there are more appointments than you know how to deal with. Your A1c has never been tested so often and your blood glucose records come under closer scrutiny that your average tax return. Everyone is working towards a healthy mum and a healthy baby at the end of the nine months, and is there to support you to help that happen.

Only, it didn’t quite feel that way. My frustration set in at the very next visit, the following week. I saw a new registrar who I’d never met before and didn’t know my history. A whole bunch of stuff relating to my complex endocrine story was dragged up again. Stuff that had been previously laid to rest long before we’d been given the go ahead to try to conceive. No one had mentioned this stuff again in a long time, but suddenly I was left with a horrible feeling that maybe I’d been foolish to get pregnant at all. None of my other worries or fears were addressed at that visit. There was quite a lot of “I don’t know” and even more “We’ll deal with that later”.

The issues got resolved, and I did get some fantastic support and reassurances from staff that know me better. But at the same time, I couldn’t help but feel that the stress with getting to these appointments was far greater than any positive outcome from them. It all started to feel a little bit pointless. I had the diabetes regime down pat. I knew everything there was to know about the risks of poor control and what I needed to do to stay healthy, and I was achieving excellent results. Now I just needed some normal pregnancy support. You know, the kind of care that non-diabetic and “regular risk” patients get in early pregnancy.

It wasn’t forthcoming. By the time I was approaching ten weeks of pregnancy and still all we’d done was talk about my numbers, it was getting a bit thin. I didn’t feel pregnant anymore… I felt like a numbers machine… a science exeperiement. Spending £25 and a two and half hour round trip to look at DexCom graphs that Ian and I can look at together at home, or even email to the hospital if we need extra input, was starting to really grate. And the final straw was when I was told that  got a “gold star” for my A1c of 5.8. “It’s brilliant I was told “We don’t normally see numbers like that until much later in pregnancy, when the blood volume really increases and the red blood cells turn over faster. This is the first time I’ve seen a number so low so early in pregnancy.”

That made me think “Whaaaaat…” Because it made me think that maybe they can’t be so hot at this diabetes and pregnancy thing if an A1c in the 5s gets remarked upon. But more than that it really cemented the fact that travelling all this way wasn’t worth it. As far as they were concerned, I was already doing great. I could agree on the diabetes front, but I wasn’t so sure about the rest of my pregnancy.

I’ve always been a bit of a diabetes care rebel. Not in terms of not doing what needs to be done, but more I terms of doing things my way. My parents started the trend by giving me extra insulin for treats as a child. They were frowned on at the time, but a quarter of a century later it’s the accepted norm. The thing is though, I didn’t want t be a rebel anymore. Becase suddenly this isn’t just about me anymore. It’s about our baby too. So I wanted to toe the line and do what was best for both of us. Which is why I felt so frustrated when the care we got didn’t feel like “best”. By default, they drove me to rebel.

First of all, I put my foot down and said I was only coming once a month, instead of once a fortnight.

But that still didn’t address the fact that I felt as though I was getting no routine pregnancy care. I didn’t like the fact that the hospital was so far from home, and couldn’t see how that might work if I went in to a spontaneous labour at the end of my 40 weeks. So I made a pretty big decision to move all my care to my new local hospital. It would mean that I could get my pregnancy and diabetes care closer to home, and deliver the baby just a few miles from home as well. Their reputation may not be as an internationally renowned teaching hospital, but they can provide excellent pregnancy knowledge and care, and as much diabetes support as I need.

It was strange, attending my first appointment at the new hospital this week. The people seem lovely, but of course I don’t know them like I know the people I’ve been working with for over a decade. I don’t know how the system works at the new hospital, or where anything is. But I do feel that I’ve made the right choice for my health, and my baby’s health, during this pregnancy.

I’m planning to return to my old diabetes centre just as soon as pregnancy is over. They haven’t really done anything wrong. It just wasn’t the right place for the pregnant me.

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