Seeing those little pink lines on a pregnancy test is incredibly exciting – but when you have a chronic illness, it can also be immensely daunting. There is so much to look forward to, as with any pregnancy, but sometimes that anticipation can get swamped in anxiety, medical appointments and the realities of life with a long-term condition.
I’ve been meaning to write this one for a while. I remember searching “pregnancy – diabetes – RA” when I was pregnant with Tiny nearly four years ago, and Google failed to come up with much. There are a several great blogs about pregnancy and diabetes, but I couldn’t find much about RA other than standard medical advice.
And there was certainly nothing about having the two together while growing a mini human! I desperately wanted to read the stories of other people in my position – for reassurance and to feel less alone. So here’s my two-pennies – I hope this blog helps someone else who is pregnant with a chronic illness.
I have to say that in both pregnancies, the care I received from the diabetes team was second to none. I saw my consultant every fortnight and then once a week just before birth, and the diabetes specialist midwife was always on the end of the phone. I had lots of extra scans to make sure my babies were growing properly (as it happens, they were both enormous piggies). Good blood sugar control is so important when you are pregnant and there is an increased risk of complications for both mum and baby, however good your control is.
In terms of my RA, I was basically left to it. Unfortunately, my consultant left the trust just before I found out I was pregnant with Tiny, so I didn’t know who to ask for help. I had come off methotrexate before becoming pregnant for separate reasons (methotrexate is a big no no during pregnancy) and was put on sulfasalazine, which is (as far as they can tell) safe to take when pregnant. Some women go into remission during pregnancy, some get worse and for some, like me, it grumbles on as it usually does. I had good patches and bad ones, but on the whole my RA slunk into the background as I focused on my diabetes control, which has a much more significant impact on the health of the growing foetus.
Here are some lessons I learned during my pregnancies. They might be useful for anyone classed as having a ‘high risk’ pregnancy. I still use much of my own sage advice when approaching my non-pregnancy healthcare today:
- Be assertive about what you want, and what you need…
I ‘slipped through the net’ a bit with the rheumatology department when pregnant with Tiny (I hadn’t been diagnosed with RA when I had Small). When I turned up at my routine appointment and they said, “Sorry, the consultant hasn’t turned up,” I had to be a bit… assertive. “Nope, I need to see someone, today. I am 24 weeks pregnant and don’t have any plan in place.” I saw a nurse that day, but it was actually my amazing diabetes consultant who made sure I saw a rheumatologist before Tiny arrived to talk through birth, drugs and breastfeeding. Having a plan in place in case I had a flare after she was born took a load off my mind.
- With Small, I was admitted to hospital for two days before I was induced at 38 weeks for steroid injections (this is to make sure the baby’s lungs are properly developed if they are going to be delivered early). They admitted me because I have type 1 diabetes, and steroids cause blood glucose to go high. But I was bored out of my skull on the antenatal ward, and did all my own blood checking and insulin adjustments myself. With Tiny, I asked to be allowed to stay at home. We had a plan to go to the hospital if it all went wrong, but not being admitted meant I didn’t waste my last two precious days with Small before his little sister arrived.
- The diabetes specialist midwife warned me that obstetricians and midwives alike would freak out about my insulin pump. She advised me to just be firm that I knew what I was doing, and that under no circumstances should I let them take it from me. It felt like everything else about the process was being taken out of my hands, so it was a comfort to know at least I was in control of this aspect of my body. I put my husband through some training on how to use the pump and blood glucose meter and we were a team throughout both births. When I had Tiny by c-section, the anaesthetist was hell-bent on taking my pump out and putting me on a sliding scale (intravenous insulin drip), but I was absolutely insistent that I didn’t want that, and I won over in the end. Sometimes it’s necessary to be pushy! Consultants might have five minutes to look at your notes – you live your whole life in your body.
- … but listen to the experts!
One of the good things about being pregnant with diabetes is the relationship you can develop with your health care team. My non-diabetic friends often saw a different midwife at each appointment, but I saw the same consultant and midwife throughout both pregnancies. This meant I trusted them fully and made it easier to take their advice, even when it seemed to contradict my instinct. I still see the same consultant today, and she remembers my children’s names and asks after them. It feels so great that I can report how well they both are. It feels pretty special knowing that she and her colleagues played such a significant role in bringing my children into the world safely.
- Even if you don’t know the doctors you are seeing well, there is an element of trust you have to choose to take. One rude consultant upset me with her comments, but I knew she was a leading expert in her field so had to overcome my hurt feelings to trust her advice. But you should always ask questions. And if you’re really not sure, ask for a second opinion.
- Don’t take on fear-inducing comments and advice
One week, my usual diabetes consultant wasn’t there, so I saw a registrar instead. I must have been about 14 weeks pregnant. As soon as I entered the room she proceeded to read me an epic list of all the possible complications that diabetes presented for me and my baby. “Let me stop you there,” I said. “I’m well aware of the risks, thanks, can we talk about my blood sugar control?” She answered that she needed to read them to me. “No, thanks. I promise I already know them, and I am doing everything I can to avoid them.” At that point she gave up her quest. But it made me realise that hearing those risks over and over again breeds fear. Fear of something out of my control. Here I was, already pregnant. I needed motivation to do the best I could, not terror.
- Friends and acquaintances also asked about what might go wrong and mentioned various stories they had heard. It was an effort to not take on their worries. My response was usually, “I’m working hard to get my blood sugars right, and have great medical support, but thanks for your concern.”
- Obviously, there were times I felt worried for my babies and guilty that I didn’t have everything perfect. Prayer and talking about it helped me out of these moments. But I had to choose not to take on unwarranted and sometimes wrongfooted fears about being pregnant with diabetes.
- If possible, take a cheerleader to all big appointments
I made the mistake of going to a scan on my own with Tiny. “I’ve got this, I’ve done plenty of scans!” But it went terribly and they were very concerned about Tiny’s size. I needed someone there to hold my hand and help me ask the right questions. This one definitely isn’t just for pregnancy – even now I try and take a friend, husband or mother with me if I know an appointment might be difficult emotionally, or that there might be lots of information to take in.
- Remember what the endgame is
There were times during both pregnancies when I felt completely overwhelmed. I was about 35 weeks pregnant with Tiny and one of the obstetrics consultants told me off at a scan for not having better control. I was at an HbA1C of 38mmol/dl – the best I had ever had and was checking my blood so much my fingertips were callouses (gosh, I wish I’d had a CGM!) I had been to two different hospitals several times that week. I sat in the waiting room afterwards and just cried. I had to remember that this baby was worth all the effort.
- Sometimes I felt very alone. Towards the end of my pregnancy with Tiny, there were concerns about her size and health. I felt like I had sole responsibility for her. I became obsessed with how much she was or wasn’t moving, constantly alert for signs that something might be wrong. I believed that if anything did go wrong, I would be to blame. That last month of pregnancy was emotionally very hard, and I was so grateful for good friends and a supportive husband.
- My diabetes made food during pregnancy especially tricky. I felt very sick during the first trimester of both pregnancies and only wanted to eat very sweet and very salty things. Very sweet was obviously not a great idea, so I became a bit of a salt-fiend. Having said that, I became extremely sensitive to insulin in those first few weeks so was able to eat ginger snaps and liquorice (so much liquorice) and still have good blood sugars.
- Safety first rather than ‘the perfect birth’
I was all steroids, monitoring and operating theatres for both births. For various reasons, it’s generally considered safer to deliver women with diabetes a bit early (exactly how early is a subject of great debate). I was strapped up to multiple machines so couldn’t use a birthing pool or even walk around much with Small. I sometimes felt quite sad that it wouldn’t all happen ‘naturally’. It felt rude forcing my babies out into the world several weeks early. I wanted to be ‘normal’. But the reality was that they were safer out than in at that late stage, and at that was what really mattered.
- One benefit of all this planning was knowing exactly what day both of them would arrive. No waiting around two-weeks overdue for me! When Tiny was born it meant we could plan Small’s childcare properly and make sure we had all his birthday prep ready (their birthdays are two days apart!)
- Have realistic post-birth expectations
Tiny was always going to be airlifted by planned c-section due to her size, but somehow I wasn’t quite prepared for the recovery time. It was over a week before I could get downstairs in less than five minutes. I was completely useless, which meant lots of rest and lots of staring and my gorgeous new baby – both good things! My husband was amazing and we had loads of support from friends and family. But it was frustrating nonetheless, and I wish I had better prepared myself for it mentally.
- I was very keen to breastfeed Tiny. However, I knew that would mean coming off the sulfasalazine as it passes into the milk. I also knew that meant risking an RA flare. After birth, as pregnancy hormones dissipate, a flare becomes more likely anyway. Sure enough, three weeks after Tiny arrived I was in agony and could barely lift her, change her nappy or even hold her comfortably. Enough was enough and I knew I needed to get back on my meds. My husband and I had talked it through before she was born and knew that formula was the way forward. I knew the decision was the only sensible one, but my hormonal, emotional self still found it difficult!
Phew, so there’s my braindump on being pregnant with Type 1 diabetes and RA. Nine months of appointment-overload, counting every last gram of carbohydrate and creaking through without painkillers. But worth every second!
Here’s some links to helpful organisations if you are pregnant/thinking about pregnancy and have RA or diabetes: