Alex Durussel-Baker is an Edinburgh-based artist and creator of Diabetes by Design, a non-profit organisation raising awareness for type 1 diabetes (T1D) through collaboration with clinical experts. Alex designs prints and “companion cards”, which are toolkits aiming to support people living with T1D as well as those supporting loved ones with the condition. Alex’s design “Acceptance” is featured as the cover art of this issue of O&G Magazine.
Alex’s work is inspired by her own experience navigating the highs and lows of T1D. In this feature, she shares her experience with the condition, particularly throughout her two pregnancies and births.
Let’s start with your diagnosis. When were you diagnosed with T1D and what do you remember about that period of your life?
I was diagnosed in August 2018 over the phone, while on a plane about to take off for New York. At the time I didn’t really know anything about diabetes, or more like I knew all the wrong things: I thought it was something you got from eating too much sugar, or old age! I didn’t recognise the telltale signs of T1D at all: excessive weight loss, frequent urination, constant thirst, and exhaustion. I’d simply been to the doctors that morning because I’d been feeling very tired and had lost a lot of weight.
When I hung up from that call with my doctor on the plane, promising to check in to hospital as soon as I landed, I remember being struck with disbelief. Naturally, I wanted to Google everything I could about T1D, but instead I was faced with nine long hours of airplane mode to contemplate what she had just told me.
I went to the hospital when I arrived in New York – thankfully I’d bought travel insurance before boarding the plane! They told me I had T1D, and that there was no cure, only management.
My life will forever be split into the time “before” and “after” my diagnosis.
Being diagnosed with T1D was like being forced into a crazy new hobby, but one that your life now very much depends on.
You are dropped into a crash course you never asked for: there is so much jargon to learn, new information, a million appointments, new tools, drugs, and complex calculations just to get through the day. My experience of that time was overwhelming, pretty clinical, and ultimately a bit lonely.
Can you talk us through your first pregnancy and birth experience? What were the biggest challenges you faced whilst managing T1D throughout that period?
When I was lying on a stretcher in the emergency room of that hospital in New York, the first question I asked the healthcare professionals was whether this would impact my ability to have children (the second question was if I’d still be allowed to eat cake, which tells you a lot about my ignorance of T1D at the time!). Many healthcare professionals were hesitant to give me an affirmative answer, likely because they didn’t know until I had stabilised, but for the first year or so I felt that having children would be out of reach for me, which ultimately led me to experience clinical depression. It wasn’t until I got the mental health support I needed that I was told that, of course, people with well-managed blood sugars could have healthy, happy pregnancies. Only then did I seriously consider it.
My doctors told me that a T1D pregnancy would be the hardest thing I’d undertake in terms of diabetes management, as you have to keep your blood sugar in a very tight range: 3.8–7mmol/L, 70% of the time. A normal T1D range is typically 4–10 mmol/L. It was a bit like being diagnosed all over again: measuring food, constant finger pricks, and learning new ways to keep my blood sugar as close to that of a non-diabetic as possible. And once I was pregnant, that focus became even more intense, because now a little life depended on me keeping a hawk’s eye on my blood sugar fluctuations.
But as well as being nerve-wracking, it was also a fascinating time, learning about how the pregnancy was affecting my blood sugar. In the first trimester, as the immune system is suppressed to allow a “foreign body” to implant itself, this also suppressed my autoimmune disease from attacking my remaining insulin-producing cells: meaning I needed far less insulin and could even eat foods I’d been avoiding, like pizza and pasta, which are always a blood sugar roller coaster! But by the third trimester, I was taking enough insulin to kill a horse, just to eat my lunch.
I did this first pregnancy entirely on Multiple Daily Injections (MDI), sometimes injecting as many as 13 times in a day, especially towards the end. All that focus paid off though; I got my HbA1c down to 36mmol, which is that of a non-diabetic.
Unfortunately, one of the biggest challenges came not from the condition itself, but from my clinical team. One specific obstetrician wanted to induce me at 36 weeks from day one, regardless of my diabetes management, because it was protocol, and I’d be risking stillbirth should I go beyond. While these warnings perhaps came from a good place, having to fight at every appointment to keep my baby inside me caused considerable stress.
In the end, thanks to the advice of my midwife to start harvesting colostrum early, lots of labour-inducing acupuncture appointments, and one membrane sweep, Rowan came spontaneously at 37.3 weeks, after 35 hours of labour, a happy, healthy boy.
How did your second pregnancy compare? Were there things you approached differently or felt more confident about the second time around?
For my second pregnancy, I was lucky enough to be put on the Ypsomed CamAPS closed-loop insulin pump. This reduced the mental load of blood sugar management by about 40%; I wouldn’t have considered a second baby without it, given how much of my attention was already taken up by my toddler and being self-employed.
Due to the experience of the first pregnancy, I went into my first appointment ready to plead my case, but my new diabetes team surprised me by saying they wouldn’t induce me until 38 weeks, which was a great relief. While there was much to learn in getting used to the new pump, I did feel much more confident this second time around, both in managing it and in advocating for my needs.
I took the same approach to help naturally induce my labour: colostrum harvesting at 36 weeks, copious amounts of labour-inducing acupuncture, and a membrane sweep. Less than 18 hours later, Arran was born through vaginal delivery.
Unfortunately, this is where things went a bit haywire. While my HbA1c was well within target, Arran was born with neonatal hypoglycaemia. Less than 30 minutes after the cord was cut, his blood sugar dropped to 0.4mmol/L. He was rushed to ICU, where we ended up spending six days stabilising his blood sugar.
It was heartbreaking to watch my little one go through all of that in the first week of his existence.
While the medical team at Edinburgh Royal Hospital took amazing care of us, and Arran was in the safest, most capable hands, I was really frustrated that I hadn’t been better prepared for this eventuality. I knew that post-birth hypos could happen, but no one had explained the severity of it. I’d assumed we’d just give the baby a bit of sugar and wait 15 minutes, the same way I treat my own hypos – not six days in ICU attached to a sugar drip, with no idea as to when it will end! I feel my expectations could have been better managed during my bi-monthly appointments with my diabetes team.
The postpartum period can be demanding. How did you manoeuvre taking care of your own health alongside the needs of a newborn? Do you have any tips or lessons you’d like to share with new mothers living with T1D?
The first weeks with a new baby are wild for anyone involved. From a T1D perspective, you also have to deal with the hormone drops, breastfeeding, irregular meals, and sleepless nights, all of which affect your blood sugar. As a result, I’d make sure to stash lots of hypo snacks around the house and within easy reach, as you never know when you’ll be nap-trapped. Before being on a pump, I had some of the scariest, most stubborn highs postpartum as my body readjusted to its new insulin requirements. Easy to say, but in those moments, all you can do is be gentle with yourself and not overcorrect – and remember a high or a low never lasts forever.
One thing that caught me off guard is that, in Scotland at least, before the baby is born you’re constantly in touch with your diabetes team, but once the baby is born, you don’t see them again for 6–12 months. You can call them, but it does feel like you’re a bit on your own, and the midwives and health visitors might not really know much about T1D. So be prepared for this and make sure you have a T1D community or diabetes forum to turn to.
I often joke that my diabetes is last in line when it comes to tending everyone’s needs; that’s partly just the reality of being a parent. But I’ve also found that involving my kids has helped. My toddler now knows what “mummy’s low” means and will bring me a juice box, and also helps me with my insulin pump changes, which is pretty heartwarming. Teaching them early about disability and chronic illness normalises it in a way that I think will serve them as they grow up.
Looking back now, what do you wish you had known or been told before going through pregnancy with T1D?
I wish I could have heard a few more positive and real stories from other T1D mums first. It’s quite lonely being referred to as an “at-risk pregnancy” all the time, especially when you often find yourself in prenatal classes with “normal” pregnancies. It can be quite othering and worrying, when, actually, all pregnancies have a degree of risk. Hearing from women who’d been through it and come out the other side with healthy babies would have made those moments easier.
I also wish I’d known earlier that, as a patient, you’re entitled to change healthcare professionals without giving a reason. If I’d known this, I wouldn’t have suffered through those conflict-filled appointments with the obstetrician wanting to impose the 36-week induction protocol on me regardless of my management. You don’t have to justify yourself or fight your corner with someone who isn’t listening, you can just ask for someone else.
And finally, I wish someone had discussed the possibilities and treatment of neonatal hypoglycaemia with me, seeing as it’s apparently one of the most common metabolic issues among newborns and having diabetes is a risk factor. We understandably spend so much time during clinic focusing on the mother’s blood sugar fluctuations, but I feel this topic could have been covered during one of my many appointments. Even just knowing what to expect would have softened the shock of those six days in ICU.
But if I could go back and tell my younger self anything, it would be this: yes, it’s a crazy amount of checking, pricking, and dosing, but you can do it. It will be fine. And at the end, you’ll have two beautiful, healthy boys.
You use your art to advocate, raise awareness for, and educate others on T1D. How does your lived experience shape your work and what is the key message that you hope people take away?
My lived experience with T1D shapes every aspect of this work because I’m designing to prompt the conversations I desperately wanted – or often didn’t know I needed – when I was first diagnosed at the age of 30. Instead, I was drowning in clinical information about carb counting and insulin ratios, but not finding much that acknowledged the identity shift, the social weight, or the mental exhaustion of making the extra 180+ diabetes related decisions every single day.
In the UK, as many as one in four adults with T1D experience diabetes burnout: when the weight of daily management piles up and you hit a wall, mentally, emotionally, or both. My work is mainly about raising awareness of the mental toll of this condition to help people seek help.
One of the mantras of my work is: If you can name it, hold it, and even laugh at it, you can begin to overcome it.
When something is invisible, it’s easier to ignore, misunderstand, or simply not know how to talk about. But when you have something tangible, something visually interesting that invites curiosity rather than pity, you create an opening for real connection.
Through the Diabetes By Design artwork and T1D Companion Cards, I’m trying to make the invisible visible. I want people living with diabetes to feel understood and less alone. I want loved ones to have a way beyond words to connect with what their partner or child is actually navigating.
I want healthcare professionals to have tools that also help acknowledge the psychological toll, not just the physical management.
I want to give people permission to have those difficult conversations, but in a way that feels approachable, even light-hearted at times.
Because ultimately, human connection is the most powerful support tool we have. And if my work can facilitate that, if it can turn isolation into conversation, then that’s how we make living with this condition a little less clinical and a lot more liveable.
Speaking directly to our readership of women’s health practitioners, what would you like them to understand about the lived experience of T1D and pregnancy to help them better support patients going through this?
It’s a tough one, but maybe I’d start by asking your patients how they like to receive information: do they want to know everything, or would they prefer a more filtered approach? Most importantly, don’t assume what they can handle or that they already know.
As was the case for my second son’s experiencing neonatal hypoglycaemia, the gap between what my healthcare team assumed I already knew and what I actually knew turned what could have been a manageable situation into a deeply distressing one. Not because the risk existed, but because it wasn’t explained and my expectations weren’t managed.
When I later expressed how upsetting it had been to learn about this complication after the fact, a healthcare professional said to me: “We never know how much to tell patients… we don’t want to come across as fearmongering.”
I understand the pressure behind that statement. Healthcare professionals see the full spectrum of reactions, they’re short on time, and they genuinely don’t want to overwhelm people. But to me, there’s a fine line between reassuring someone and protecting them from information they actually need. It’s not about the facts themselves; it’s about how they’re delivered, with care and empathy, that matters.
When we embark on an at-risk pregnancy, we already know what’s at stake. Trust us to manage difficult information too. Give us the tools to prepare ourselves mentally and practically, rather than leaving us to piece it together in a crisis. I think that a small shift from assuming what we can handle to asking what we need could make all the difference.
