September 30, 2021 | By Renza Scibilia
I remember so much about how she came into the world and the relative ease of it all. She was – and has continued to be – an easy kid. I’ll never know if it is a nature or nurture thing, because we only have one. Maybe we got lucky. Maybe my husband and I are brilliant parents. As much as I’d love to think it’s the latter, it’s most likely not.
I feel that in some ways having an easy kid has been the trade-off for the difficulties we had in getting her into the world. Because that certainly wasn’t smooth sailing.
I know that I am not alone when it comes to difficulties conceiving, or holding on to a pregnancy. And I also know that my experiences are by no means the most difficult or devastating. I was able to carry a baby through to term, and we have a child.
But one of the things I realised when I was trying to get pregnant, and then through subsequent pregnancy losses, is that there isn’t much info out there – specifically, lived experience stories. And there is even less for those of us with both diabetes and fertility challenges.
And so, I started to write about it, and talk about it. I wrote about it on my blog, and in other online diabetes forums. And I stepped outside the comfort of the diabetes world and wrote about it on one of the world’s largest women’s news networks.
I had four pregnancies and have one child. One miscarriage happened before her, and two after. Each came with feelings of devastation and loss and hopelessness. Each was difficult in its own way. Each broke my heart into a million pieces – pieces that I’ve never managed to fully glue back together.
In the 23 years I’ve lived with diabetes, I’ve learnt to make deals with myself. I do this around the times of complications screenings, when I am feeling overwhelmed by the burden of diabetes, or when I am feeling just plain done with it all. But never have I done this more than when I’ve been trying for a pregnancy.
Before even starting to try to get pregnant, I bargained that if I had one healthy baby, I probably wouldn’t try for more. And then when we started trying, as each month passed, I doubled down and swore that there would be one and one only, because that would be such luck. I told everyone who would listen, I begged my obstetrician to do more investigations to find out why I couldn’t get pregnant, swearing that it would be the only time. I started taking hormones to make me ovulate more regularly and worked so hard, desperately managing to keep my glucose levels within the tightest range I could, never letting up. I bargained that it was only for one pregnancy, so of course I could do this.
Except, when our daughter was eighteen months old, one wasn’t enough. And so, we tried again. I was hopeful after falling pregnant relatively easily (for me) this time, and cautiously optimistic that perhaps I’d not needed to make that deal of ‘just the one’. But, at eleven weeks, I started bleeding one afternoon, and rushed straight to my obstetrician’s office, only to be told that I was miscarrying again.
I felt that I had broken my bargain by trying again. We decided that one would have to be enough. And I accepted that. I was disappointed, and hearing my daughter say how much she wished she could be a big sister was heartbreaking – for her and for her parents. But I couldn’t put myself through it again – the anticipation, the elation…and then the loss.
Or could I?
With my fortieth birthday looming, we thought we’d try again. One last hurrah, so to speak! In the weird way that life works and bodies work, I found myself pregnant the first month we tried. Had my luck turned? Would an easy pregnancy be on the cards, despite my 39-year-old body? It seemed that way. Early blood tests showed super high rates of pregnancy hormones. Morning sickness took hold, but not too horribly – just enough to remind me that I was pregnant, and other pregnancy symptoms were ever present. We’d planned a trip to Europe and the US to coincide with two diabetes conferences, and nervously decided to continue as planned. I worked with my obstetrician to have a list of healthcare professionals I would be able to call on if required, and ensured my travel insurance covered pregnancy.
France first, and we headed off with a delicious secret. I wasn’t ready to share with anyone other than our closest family just yet. I was careful with what I ate, but other than that, felt amazing. Next, we went to New Orleans, and again, I was careful and mindful. We went to Chicago and, at ADA’s massive annual conference, hit thirteen weeks. We started feeling confident enough to tell people – we needed to: my stomach had started popping!
All was looking good. On the flight to NY, I remember thinking that I was so happy that this baby would be getting a first taste of my favourite city, albeit from my womb. Now into my second trimester I felt strong and energetic and started to feel more confident. We walked NY streets, my diabetes behaving itself, and the pregnancy advancing. I bought a baby bag from Bloomingdales, sharing my news with the salesperson who congratulated me with a hug.
And then, over a weekend in Westchester celebrating a friend’s 40th birthday, I started to miscarry. After waking to horrible cramps, I went to the bathroom, and there were the tell-tale signs that all was not well. I got my first glimpse into the US health system with a visit to A&E, followed by an admission for a D&C.
My body had failed me again. At least that is how it felt. And with it, the flood of all the issues that being a woman with diabetes brings swept over me.
It broke me. I was resigned and done. It wasn’t that I felt that one wasn’t enough because our daughter is everything, but I felt that I had failed so many around me. It took several years of seeing a psychologist and a lot of hard work to stop feeling so hopeless. There are days that I still feel a loss so intense that I get swept up in it again and pushed down by it.
I have a number of friends with diabetes who have similar stories and knowing about their experiences has helped me feel far less alone and isolated.
I do know I am lucky. Getting pregnant, having a healthy pregnancy and then a baby remains the hardest thing I have ever done – both physically and emotionally. I celebrate the hard work I put in to get her here. For every ounce of sadness and disappointment I feel at the fertility troubles I experienced, I am so, so lucky to have millions more of joy and happiness. I do think about the babies we never had and wonder just how different our family would have been. But I also think of how different it would be if I’d not gone through those challenges. Over time, I’ve learnt to reframe how I feel about myself and my body. Instead of feeling like my body had repeatedly failed me, I instead think of just what it achieved. I see the biggest achievement every day. She’s sixteen now – a marvel! I conceived her. Grew her. Fed and nourished her. Have been there for her. That’s kind of remarkable in every possible way.
Note: Experiences of women with diabetes and pregnancy will vary. Not all women with diabetes will experience fertility challenges or pregnancy loss, and it is not clear what impact diabetes has on either. What is clear is that you should speak with your healthcare team about how diabetes can impact getting pregnant and pregnancy and it is recommended that women with diabetes plan their pregnancies.