Hughes Syndrome & Pregnancy

[LKS]

I have Hughes Syndrome (also known as APLS or 'Sticky Blood'), and take a daily dose of Warfarin after having a DVT 3 years ago. I am 31. I'm told that it is quite possible for me to have a baby, but obviously it is more complicated than usual. Is there anyone else in a similar position that could give me some insight into the implications of warfarin, Hughes and pregancy? Thanks.

Hi LKS I have Hughes too. You will be put on heparin self injected instead of Warfarin when pregnant as it doesn't cross the placenta. They may put you on aspirin as well. They'll do more growth scans and doppler scans to check the function of the placenta (sometimes small clots can form which may impair the baby's growth). You should be put under consultant care and your haematologist should also monitor you closely throughout.

You may be advised not to have an epidural or have to wait 24 hours after you've last injected heparin before you can have an epidural. You can take heparin post birth while breastfeeding. They may not advise you to go as 'overdue' as other people (I was told I would be induced at 40 weeks - I've never got past 38!) but this may depend on individual circumstances.

If you are anywhere near it I would consider asking to be booked in at St Thomas' in London as they have the big hughes syndrome unit there.

Hope this helps!

I have Hughes too..
Am currently 30 weeks pregnant. I had a lot of miscarriages before this pregnancy and thats how they found out about my Hughes..I had a dvt two years ago.

I was started on aspirin, 75mg twice daily from conception - no the doc wasn't present just knew we were trying and I'd take it from ov every month that we were trying then discontinue after a neg pg test.

At 6 weeks pg I had a scan to check pg was in the right place and all progressing well and I then started daily injections of clexane ..warfarin is not compatible with pg ..
I have to take the clexane til 6 weeks post birth as the risk of dvt climbs post delivery and am due to stop the aspirin at 36 weeks..

am happy to chat if you want any more info .. good luck .x

Thanks for your responses - its so difficult to get reliable information, your posts are much appreciated.