possible clotting issues, following two late miscarriages..Hughes syndrome?

[Jomel]

I had a misscarriage back last June at 11.5 weeks, it was an awful shock for us, and very hard to recover from. 3 months later we were pregnant again and sadly at 19 weeks I delivered our son, he was found to have the cord wrapped around his neck three times and at the time of delivery the midwives said that the cord was the reason (in fact they used the term "conclusive").

Earlier this week I had to see my consultant..whereby was told the most shocking news...the cord was in fact, NOT the reason for our 2nd miscarriage and that it may be clotting issues which could have caused both miscarriages. This news knocked me, because we had only just decided that we would like to TTC (thinking that our 2nd miscarriage was a tragic accident)...we have been TTC since last week, and now I discover that I could have clotting issues that will need to be tested when I'm NOT pregnant, that also could take quite a while to carry out..but worst still I could be pregnant now and potentially putting my baby at risk. I'm also faced with the concern that if it is not clotting issues, then I have no reasons for either miscarriages, therefore in my head quadrupling the risks of TTC.

Is there anyone else that can tell me about possible clotting issues? From what I've read it could be Hughes syndrome? How long do tests take etc..anyone with Hughes syndrome that is now pregnant?

I'm so angry at the midwives present at our son's birth..they shouldn't have lead us to believe that it was a cord injury when they didn't know for certain..now we are in such a difficult predicament that is so worrying :-( I have to wait until 16th April until next period is due.

I had tests done following the loss of my 22 week old daughter. I have Factor V Lydon, this is managed during pregnancy by taking 75mgs of aspirin daily.

Is there any blood thinning medication you can be taking whilst you are pregnant to reduce the risk. ?

anticoagulant

I spoke to my bereavement midwife yesterday, she has advised not to take anything just yet..but I'm guessing I could take aspirin, as from what I've read it's not harmful at all. I'm so scared now, that if I'm pregnant right now, I will never know. What is Factor V Leiden?

hi, so sorry to hear what a horrible thing you've been through. but please don't panic about possible clotting issues. They are really treatable! in fact when I was going through all my miscarriages (i had four in a row) i really hoped for a clotting diagnosis, because this is a very well researched area of recurrent miscarriage and quite 'resolvable.'
basically if you test positive for clotting then you are likely to be prescribed aspirin and a blood thinner which like heparin or clexane. usually you inject this yourself into your stomach. it's not as bad as it sounds. after my four miscarriages i took clexane for the next pregnancy and i now have a beautiful 13 week old daughter.
you are right that the tests take some time and that you need to be not pregnant to have the tests done. even if you go private, for some reason, it seems to take a few weeks.but it has to be worth waiting so that you can get the right treatment to minimise the chances of this happening again, doesn't it?
reading your post again, it does sound like the consultant is speculating, rather than having any actual evidence that clotting is your issue? what you will find is that the vast majority of obs/gyn consultants are not recurrent miscarriage experts, and so he may simply be trotting out the one well established cause of recurrent miscarriage that he is informed about...
feel free to private mail me if you have any more questions as i have been through all the tests that are available, both through the NHS, and privately in London.

i have come back to post again because your post is really troubling me. i've been lying in the bath thinking about it!
if i were you i would want to talk to your consultant again and get a clear answer as to why the midwives would have said the cord was wrapped around the neck if it wasn't???? have you been able to look at your notes? if your notes say the cord was wrapped round the neck and this was "conclusive" then why is the consultant questioning it?? is he saying the midwives got it wrong? if so, if i were you, i'd want to investigate further..
Also, was your first miscarriage, at 11 weeks, a missed miscarriage - ie the pregnancy failed earlier than 11 weeks? if so, then it is completely possible; likely even; that the failure of that pregnancy is unrelated to the failure of the one at 19 weeks...
i should make it clear i'm not a doctor! however, i have learned quite a lot about all this as a result of years of going through it myself and reading the key research and books...

So sorry for your loss. I have sticky blood syndrome and this was managed with aspirin, vit C and E. I have two gorgeous children now. I would say don't panic, babies miscarry for various reasons and most have no conclusive reason why. I have miscarried several times at various different stages and in the majority of cases I have not been given a reason despite loads of blood tests.

I think Sotough is right, you will need to query why this was said; although I know from experience that the delivery midwives do the cursory physical appraisal at birth and would not have known by looking at baby that there could be a clotting issue although size might be an indicator. With me the placenta was the thing they took most note of. If you are already preganant you will be monitored carefully by all the healthcare professionals and put on an appropriate treatment so don't panic.

Hi everyone, thanks for all your advice...the midwives at the time said that it was cord injury, because at birth the cord was wrapped tightly around our son's neck and arm and looked to be compromised. However my bereavement midwife said that if it had been the cord it would have showed up in the placenta when it was checked (she said it would be white where the cord was attached), therefore clotting issues may be a problem...I asked if it would have been evident in the placenta had it been clotting issues, and was told that it wouldn't be, therefore blood tests need to be done.

I'm really quite scared that I may be pregnant and won't be able to find out if it is clotting issues or not :-( Had I been more aware of the fact that it may not have been the cord then I wouldn't have ttc..I would have waited until after consultant appointment :-(

I never thought I'd say this, but I actually hope I'm not pregnant this month. I know they will monitor me more closley, but I can't help but think it will be useless if there is a clotting problem..I'm not sure I can go through another miscarriage!

The first miscarriage was a natural one, and wasn't a mmc, (dates were correct at time of discovering no h/b and I was already bleeding). The 2nd miscarriage was a mmc...baby had died at 17.5, I had to be induced to deliver him at 19 weeks.

I wonder if they would treat me with aspirin anyway, and if so, will aspirin be enough just in case?

Firstly so sorry to hear of your losses.I have had numerous losses(early and very late in pregnancy) which were intially put down to incompetent cervix. I was eventually tested for clotting problems and was told nothing was found.Later on(when I was pregnant in fact and had been told to take low dose aspirin) I then found out I had actually tested positive for the Lupus anticoagulant.
With the late losses both were found to have placental problems-one was a clot in cord and the other was clotting the in the placenta.
Please try and not get too worked up about this until you have some definitive answers. I really hope you get good news soon.

jomel you can be treated for clotting without a diagnosis, though i think you'd have to fight quite hard for it on the nhs. in fact some of the private fertility clinics in London do this as a matter of course - recurrent miscarriers are automatically prescribed heparin "just in case" it helps, since it is not harmful to the foetus.

What sotough said. There's limited testing for this on the NHS in direct relation to mc, especially if you've had two (not trivialising your experience at all - how awful, awful, for you) because they tend to wait until you've had at least three. In your shoes I'd have a good talk to your GP if you get on with them, and ask for a full work-up from a consultant haematologist - if you're anywhere near Cambridge, Dr David Perry at Addenbrookes is really fantastic, this is an area of interest for him and he's also lovely too. That way you can start to get a clearer picture of whether you have some clotting issues, and what they are, and start to formulate a plan to run as an adjunct to ttc. By way of reassurance, from what I understand, once you get a firm diagnosis, it's actually straightforward to treat. Very best of luck, and please do post updates, I'll look out for you. X x