Hughes syndrome anyone?

[maisiemoo]

Morning!

I have very recently been diagnosed with hughes syndrome, otherwise known as antiphospholipid syndrome or 'sticky blood'. I have one healthy daughter whose rapidly approaching 3. Her pregnancy was very complicated, with hughes being the likely cause. Since her birth, I have also had 4 miscarriages.

For those diagnosed with this disorder, I am curious to know what the process is following a positive pregnancy result. I'm currently awaiting appointments with various specialists, however would appreciate a 'heads up'.

Many thanks
Helen

 

[Jamandspoon]

Hi... I'm sorry I have no advice for you, but you might also wish to post this in the gestational complications forum - the ladies over there ave a huge amount of knowledge.
Good luck

 

[midori1999]

I have Hughes. It was diagnosed after I got bilateral pulmonary emboli in my twin pregnancy, which was extremely complicated and eventually led to the loss of my twin girls after they were born at 24 weeks. They were just too premature to survive. My waters around the first twin had broken at 14 weeks, possibly due to a clot in my placenta. I also had several early miscarriages before and after my twins, but had three normal pregnancies before that and also had my daughter since being diagnosed.

In my pregnancy with my daughter, I was on 75mg aspirin whilst TTC and then on clexane from my BFP. I stopped the aspirin at 37 weeks and clexane when I went into labour. I was seen for an early scan and then monitored regularly with scans and saw the haematologist, then I was diagnosed with gestational diabetes and referred to the GD clinic, where I was scanned either weekly or fortnightly, although I still saw my haematologist. I was booked for induction at 38+2 on my request due to the GD, but went into labour at 37+6.

This time I am in a different health authority and the haematologist wanted me to wait until I saw them at 7-8 weeks to start aspirin and clexane. However, I told her I wanted to take aspirin whilst TTC and she agreed to that. I then saw my GP when I got my BFPO, explained I had had cleaned from then last time and she was happy to prescribe it to me, so I am on both now. I see the haematologist next week and will have more of an idea about my care in this pregnancy then.

Hope that helps?