Losing the baby we never had!

Trying to conceive isn’t as simple when you are type 1. There is a lot more preparation before you start trying to conceive. Ideally your HbA1c should be below 6.5% and you should be on 5mg of folic acid as soon as you decide you want to get pregnant. Sounds simple right? Not so simple when you’ve been out of control for years.

My conception journey actually started a few years ago when my hba1c was 11.8% and I decided to take control. I was advised not to bring this down rapidly, as going from poor control to good control over night can come with a host of additional complications including increased risk of retinopathy. So there I started my slow and exhausting journey to better control. I’ve said it before, but it was like being diagnosed all over again. My husband and I weren’t in a rush to have a baby but I wanted to be at a place where I could have that choice plus be healthier and in control of this relentless disease.

I think if you have ever been on a TTC (trying to conceive) journey then you know how frustrating it can be even without diabetes. Every month you pregnancy-sign-watch waiting for your period and praying that it won’t come.  And when your period does come, a little piece of you gives up hope each time.

When your period doesn’t arrive you are already 4 weeks pregnant, 4 weeks your body has been preparing, so even before you miss your period you’re told you need to have extremely tight control. It’s exhausting! And pretty demotivating when each month rolls around and you’ve tirelessly worked for near-perfect blood sugars but the test is negative and you’re not pregnant.

And then you are! When you least expect it, and have kind of given up, there’s that line on the stick you’ve longed for. From that moment before your baby has even started to form, you love them! And I loved our Blob! From then on every high or low is not just a frustration to you, but can damaging to your baby and it’s growth. And that comes with a fear and a guilt that I have never experienced before. You now become responsible for growing a little human and you are one of your vital organs!

At conception, my HbA1c was 5.9%, I spent on average 85% in range (3.5-9mmol) and I had been on 5mg of folic acid for around 6 months. As soon as I found out my target range changed to 3.5-7mmol and my DSN wanted me to be 6mmol 1 hour after meals. Pretty darn tight! I experienced more lows than ever in the first couple of weeks and completely lost hypo awareness until below 3mmol so was extremely grateful for Dexcom to alert me when I was low. I tried to do everything right; I continued light exercise, ate a healthy balanced fairly low carb diet with plenty of fruit and veg, slept for at least 8 hours every night but then on the other hand I also have two very stressful full time jobs, one of them being a full time pancreas.

Unlike the handful of close friends and family, who we told prematurely (I mean, who can keep a secret for 3 months?) I reserved my excitement. Maybe it was intuition or maybe it was due to the fact that I had done my research. 1 in 4 pregnancies end in miscarriage and the chances increase significantly when you have diabetes especially type one. That being said, it didn’t make me love any less, I just silently prepared for the worst case scenario.

For 8 weeks my body prepared for a baby that would never arrive and then after 2 weeks it was all over. Naturally you blame yourself and I also blamed my diabetes! Was it that spike I had after I ate 1 too many grams of carbs? Did my diabetes cause me to lose the baby I worked so for hard for? It definitely wasn’t because I wasn’t under tight control, but I suppose it may have contributed to the miscarriage. “It’s just one of those things!” I heard this saying on repeat, but it is so true! And as hard as it is to grasp, this was not my fault!

I have mourned and grieved the loss of a baby that I never had. I have hated my diabetes for making it so hard and stuck up my middle finger by consuming all the carbs in site. But if anything this journey has made me stronger and more determined to be the healthiest I can be so I can give our next blob the best possible chance of survival.

There is such a stigma surrounding miscarriage and talking about it, but the heartbreak happens so often and some women go through this experience suffering in silence, but YOU ARE NOT ALONE! If anyone has experienced a loss and needs someone to talk to or has any questions about preparing to conceive with type 1, please don’t hesitate to give me a DM on Instagram @organising.chaos or email on business@organising-chaos.com


3 thoughts on “Losing the baby we never had!

  1. I so sorry for your pain , We lost our sweet Grace Levi when she born after 12 very short days , I found out the news at 2 am , alone, in ICU, dka had put me there. I knew then something was wrong but I also knew our baby would be born & she was , kicking & crying at 7lbs 8ozs, she was the most beautiful baby we have ever seen despite what my body had done to her in mind , in my heart I knew , I was already 14 wks when we found out , Grace Levi had hydrocephalus , her ears weren’t fully developed , her right leg hadn’t formed , elbow fused together , yet despite all this that sweet baby ate , pooped & peed, cried & snuggled as if she hadn’t a care in the world , we also found out she truncus arteriois , the left side of her heart didn’t form so she wasn’t circulating blood as well, surgery was scheduled 2 Monday’s ahead , she started having seizures which her heart couldn’t handle , dadgy (not misspelled , it’s what Hailee has always called him) would play his guitar , she posed for the camera , she stole our and thousands more hearts right away , I had no idea just how many people found the page her aunt had made to keep in touch in family , we were overwhelmed with love from all of them as they cared for her also. Hailee was born perfect at 35 weeks 6lb 3ozs , they were exactly 7 years & 7 days apart , she had prayed for her baby sister to come along and being 7 urs old at the time she didn’t understand why Hod had taken her after giving her to us . A part of each is went with her that day she took her last breath in my arms , the world stopped for us in that moment and even with all these words , there are none known to man that can describe that moment and each moment even to this day , we ache & long for her smell, touch & coo’s just as we did the day we lost her . Our sweet angel face didn’t deserve what my body had done to her . I have loathed this disease since that day . It’s hard knowing what to do next , even 6 yrs later that pain & sting & longing ache has gotten no less heavier . I carry it differently now but it’s there as I suspect it always will be . I am so very sorry you experienced any of that hurt , no one should ever know that feeling . ♥️


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