Sticky Blood-Hughes Syndrome Support

My History

Brief info about me... I'm Kate and live in Derbyshire. I was diagnosed with APS in 1999 after have a DVT in my leg and then having v.low platelets. Once diagnosed I was told I'd be on warfarin for life and all the issues APS 'might' have with pregnancies etc... All this at 18 years old was quite a lot to take in. After about a year I was discharged and never saw a consultant again until 2008..... I got married in 2007 and started trying for a family. We fell pregnant pretty much straight away and all started well. Was put on clexane (40ms daily) and had a 9 week scan. This is where it went wrong. I miscarried the day after the scan and this was the start of my pregnancy issues. It took a year to fall pregnant again but when I did i was again put on 40mg clexane a day but lost this baby 6 weeks. I then decided (as i'm on the larger side) to go to slimming world, where I lost 3 stone. During this time I played merry hell with my GP about the meds I had been put on as i'd been doing my research and the general feel was that I was not on enough clexane..... I requested getting a referal to St Toms but was instead sent to Nottingham QMC. I met Dr Myers there and Dr Rutherford (OBGYN) and underwent pre pregnancy counselling. In March of 2009 we fell pregnant again and this time I was put on 100mg clexane twice daily (rather a huge jump from the 40mg once a day) and a baby asprin to top me up during the day. Sadly this pregnancy again ended at 5 weeks. By this point I'd given up and decided we needed more tests on a genetic level to rule out any other issues that might be causing the pregnancies to end. During the month it took to get the apointment through for Gyne (and me and hubby eating and drinking, for the hubby, what we liked) we fell pregnant straight after the miscarriege..... Again on 100mg BD clexane and asprin but at 5 weeks I heamoraged and thought it was all over again. We went for a scan the following day expecting the worse but was told that baby was there, there was heart beat and a wiggle (the area of bleeding was outside the pregnancy and visable on the scan).

From this point on the pregnancy went as well as could be expected with monthly checks at QMC however at about 25 ish weeks we had our monthly scan and baby was not growing very well. This was monitored quite closely and it was apparent we were going to have a small baby.

Just after the new year(2009 - 2010) i took myself into hosp with back and chest pains and just generally feeling rubbish. I was kept in with the worry of the PE (although this was ruled out thankfully) but I had a routine scan (that I would have had as my last scan if I hadn't been admitted) which showed that the baby hadn't grown in the last scan... This totally freeked me out and my consultant and her team came to see me to tell me that I would be induced that week once a NICU and Labour ward bed were available. I had a wait 4 days then the day came (pregnacy had just hit 37 weeks). I was induced but it became quite apparent that bubs wasn't coping with the process so we had to have an emergency C-Section which meant I was knocked out :-( At 10.14pm on the 8th January 2010, out little girl Evie was born weighing 3lbs 14.5oz. All was good to start and she was able to stay with me for a few hours but then she wasn't able to keep warm or feed properly so was taken to the NICU. Thankfully she was only in there a few days and 8 days after her birth (and a couple of day on the transitional care ward) we were sent home.... 19 months on and Evie is showing no issues, she's constantly talking and running around the place causing havock!!

We've now decided that in the new year we're going to try for another one and are very aware of the issues that may lie ahead but know if it isn't meant to be that we've been blessed with our Evie...

To all of you ladies out there having problems, stick with it as long as you feel you're mentally able to and dont feel like a failure if you need to give in... I've been there and I'd not been through nearly as much as other APS people I know.

Sorry for the long old blog but that's my APS history and how it has affected me..... Thankfully I am generally well all of the time apart from being on warfarin and for this I am truely thankful.

Look forward to reading other peoples blogs and getting to know some of you!


Kate xxx

7 Replies

Hi Kate, Just read your blog. I posted mine a couple of days ago. Im 12 weeks pregnant now. Im petrified of losing this baby but it is encouraging to read other women's success stories so thank you for sharing and good luck with baby number 2 :) xx


You are more than welcome Rebecca. If you want a link to a APS preg support forum just let me know... there's a lot of sucess stories on there.. Now you're 12 weeks you should be fine provided you're on some form of blood thinners (if needed) and have regular checks.

Good luck and I will look forward to hearing about the safe arrival into the world. When are you due?

Kate xx


Hi Kate,

Nuchal scan today- 13 weeks now. Baby is due in Feb. Hearing lots of ladies having to have their babies early by c section but that is better than not at all- you have been the furthest a long I think. Ah that would be great if you could send me the link. I am on aspirin and heparin. My stomach is a mess!!

Rebecca x


Hi Kate

Thanks for your story - I too was diagnosed with APS in my early twenties and have just had pre-pregnancy counselling (now 39yrs old) - since I have had 6 TIAs and 1 Stroke in 11 years- but they always tell you the worst that could happen!! So its nice to hear that your wee girl is doing great.

I might try next year - if my post stroke energy levels increase!



Good luck J. We're going to start trying for number 2 in the new year but I have decided I am only prepared to have another 3 angel babies so fingers crossed it's an easier road next time.

Sounds like you've had a long old APS journey so sounds like you are due some good luck and maybe the baby making will be just that!

All the best.

Hugs Kate x



Thank you for sharing your story. I am so glad that little Evie (and you obviously) are doing well. It's great to hear the successes.

Take care and good luck inthe new year!



Just thought i'd say hi & say it can happen, I was told i had APS/Hughes after losing 3 times, demanded tests only to be told i was fat ( i am large but ended up complaining about the DR)

Didn't try for a while as felt a bit confused, & just gave up as i thought i was closer to 40 & all factors were against us, anyway we succeeded and found out just after my 40th birthday we were expecting. Spent most of the pregnancy in denial i'm afraid as i was to scared to enjoy it,

Was rushed to hospital at 34 weeks with suspected lung clot, thankfully nothing there, but advised to rest so ended up finishing work early

went for routine antenatal and asked for C section initially refused but asked for 2nd opinion via GP saw a wonderful OBGYNE who agreed to section after hearing why i wanted it, then when he read the scans he said the placenta was dying off & i needed to have CSECTION so i had one on 5th May 2009 on my partners 40th birthday

Callum is now 27months old & full of life, energy & you would never know the struggle we had to have him & would never be without him now :)

Rebecca _H good luck with your pregnancy hun, fingers crossed for you

sorry for hijacking your post, just wanted to give some more hope to others


Hannah :) x


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