Sticky Blood-Hughes Syndrome Support

Fertility and Hughes Syndrome

Hi my name is Hanna.

Our journey starts with me meeting a wonderful man who had a vasectomy 8 years before meeting me. He is 12 years my senior. After falling for one another we had the vasectomy reversed but to no avail. We went on to then have our first and second round of ICSI fertility treatment. We got pregnant on go 2 so were over the moon, that didn't last and at 9 1/2 weeks we were told the heart beat had stopped. We went again for go 3 and go 4 and on that go we had the great news of your pregnant once again. We lost this one at 12 1/2 weeks at the scan we were told the heart beat had stopped. This time i was really devastated as a lot of people have one miscarriage now i had had two. I was tested but only because i'm paying for the fertility treatment i think, and they found i had Hughes syndrome. I have never been so happy to have something wrong with me. I then went on to have go 5 and it was positive so we were told we needed 20mg of clexane and 75mg of asprin. ( i will just add i am now very overweight due to eating rubbish to make myself feel better!) Anyhow everything went really well and Scarlett is here to tell the tale and she is now 3 1/2. I must say because they had found our problem, i just thought i could have more babies. We have had go 6 for baby number 2 which ended up with my having a blood clot as they sent me home bleeding after my egg collection and we have since found out that it was probably because i had my clexane to early! We did get pregnant but lost it early on due to the drugs i have to have whilst in hospital getting better.

We then went on to have go 7 ICSI in march this year and it was a positive result and all was going well with 20mg of clexane and 75mg aspirin. Then on the 10th week scan the baby's heart beat had stopped! We were heat broken and even though we know this may happen we amused that because we had carried full term with one we would be good. We have had the baby checked fully and there was now problems found at all so we went to St Thomas hospital and met Pro Breen, They did bloods and couldn't find the APS but after a week long of upset she did say that you can get a false negative and not too worry! Mean while we went to a blood person up here that gave me our 2 positives back in 07 and they got a negative as well. However he was rude and when i explained our situation her said well it isn't that simple that you have APS! I've now had 4 missed m/c and 2 positive bloods test for it 7 weeks apart in 07 and had a full term pregnancy with clexane 20mg! i'm just waiting for another appointment to see where we go from here. My heart and mind tell me to tell then i'm having 60mg from day one of treatment and that's that but not sure!

2 Replies

I will finish this later x


Thanks Hanna - I know you must be a very busy mum!


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