From Nicole

Blood clotting disorders and pregnancy

A while back I shared the details of Avery’s post-mortem, and it appeared that everything was normal with us, and it was unlikely to happen again. Unfortunately, since that appointment one report which was missing has surfaced which shows I have a ‘protein s deficiency’ basically a lack of a certain protein in my blood which means it is stickier than normal – and this is what contributed to Avery’s death as the blood around the placenta became sticky which limited the flow of blood to her.

To be honest, my initial response to the news couldn’t have been worse – I pretty much had a meltdown! I couldn’t help but think I killed her, and that its going to happen to every child we have – however now after taking time to research, speak to our consultant and breathe it in, the reality is far from my initial concerns.

Am I the reason my baby was stillborn?

Absolutely not! Nobody could have foreseen that I had this deficiency; despite it being hereditary it rarely hinders people in their life especially when they’re healthy and active like myself, and many women’s proteins s levels drop during pregnancy, so they don’t test for it.

The sticky blood could have happened for a large number of reasons. People with blood clotting disorders sometimes struggle to make it past the early stages of pregnancy untreated, however I made it all the way to 27 weeks, where she grow magnificently.

It’s hard, but after losing a baby, you need to stop focusing on ‘what if’ because you will drive yourself crazy with it – it happened, yes it’s awful and cruel, but it happened and it’s all about learning to live with the pain and looking forward rather than back.

What is a blood clotting disorder and how will it affect my pregnancy?

Protein S deficiency is a disorder of blood clotting and it basically means that I’m at more of a risk of developing abnormal blood clots such as DVT. Given that our blood flow increases during pregnancy, it’s obvious that it causes complications.

At first I was terrified, however my consultant explained it very wisely, he said: “See having an answer as a positive, as we know exactly what we’re looking for and how to treat it – better to be in the know than going into pregnancy in the dark!”

I will be treated with daily aspirin and Tinzaparin injections to thin my blood – sounds daunting but apparently it’s actually very common for women to have daily blood thinning injections to support them through pregnancy – which is a welcome relief!

It’s scary and sad to know that it’s never going to be easy for our future rainbow babies, but I have to be thankful that they know what to look for and more than anything, what happened to Avery was peaceful and quick – she drifted off in her sleep and I can’t ask for anything more than that!

One day at a time .. XO Nicole

9 thoughts on “Blood clotting disorders and pregnancy

  1. This is such a hard thing to hear but I’m glad for you that you have this diagnosis as it may also be important in other health aspects in the future. I have something similar but not the same and I have been doing the daily injections (I use Clexane) since my embryo transfer in November and it hasn’t been as bad as you might think. After a while you get really speedy at it!! The part that’s a bit annoying is that I get bruises so I have to be creative about where to jab so as to give my skin a rest. Wishing you only good things!!

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      1. I agree. I was lucky (in a weird way) that my best friend had to do the same thing so I felt some comfort from knowing she now has 2 kids!! It is not so much fun but you gotta do what you gotta do. xx

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  2. I’m sorry for your loss. I know some days are harder than others but believe it or not you eventually you will see a light at the end of the tunnel. I had two miscarriages before finding out I had a blood clotting disorder. What kept me going was the thought of my future rainbow baby and the immense love I have for a baby that hasn’t even been created yet. Having an answer was also very an important part of my of healing process. Thank you for sharing your story. Wishing you the best of luck! Remember it’s okay to not be strong every day and to let your emotions pour out as they come. Xoxo

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