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Find support and share your experiences on our Miscarriage forum.

Miscarriage/pregnancy loss

Late Missed Miscarriages

15 replies

caz55 · 15/06/2008 13:06

Hi I am new to this and wondered if anyone out there has been through what I have and gone on to have a successful pregnancy.
Basically in 2004 I had a lovely healthy daughter with no complications. (just took 2 years to conceive). Since then I have had probs with lack of periods and in 2007 conceived again finally only to find that I had a missed miscarriage at 16 weeks. Lots of tests - no answers. This year after a discovery that I was producing too much oestrogen and that I kept getting a cyst on one ovary, an operation to remove polyps and one dose of clomiphene, I conceived again. This time I bled heavily at 8 weeks but the baby was alive. However I had a haematoma (large blood clot) in the uterus. So it was touch and go for 8 weeks or so. At 16 weeks I received the good news that the clot had resolved and my chances were now good. HoweveR I found out this week (19 weeks) that the baby had died and it was about 3 weeks ago ie just after my "good news". I am devastated and totally heartbroken and desperate for some similar stories with a successful outcome. Please?

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justjules · 15/06/2008 13:09

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Julezboo · 15/06/2008 18:07

I agree with Jules, Ask for test to rule out clotting disorders, sounds very similar to my pg with ds - I had heparin injections right the way through and Im convinced it help him "hold on"

Sorry to hear your going through this xx

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caz55 · 15/06/2008 20:40

They tested last time for clotting disorders and this time I think they are just looking for signs of infection in the blood but also doing a post mortem etc. I have read a lot about aps in the last few days but it wouldn't explain why I had no probs having my daughter 4 years ago. She was also 8pounds 8 which the consultant thought ruled out any clotting probs. What is Hughes?
Did you have heparin and aspirin Julezboo. Were you actually disagnosed with a problem or just had miscarriages?

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justjules · 15/06/2008 21:37

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caz55 · 16/06/2008 07:22

Thanks Jules,

I expect they will be testing for that as they will be doing the full range on the baby and have my blood also. Its just such a horrible wait for results and not knowing what lies ahead frightens me. I feel like the last 6 years of my life has been dominated by pregnancy, ttc and miscarriage. It will be nice to just live again!

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TinkerbellesMum · 16/06/2008 12:55

Hiya, yes it would explain why you had your daughter because some children have to be born so that there is a 20% success rate, if you see what I mean! There is only an 80% chance of not carrying a healthy baby to term with Hughes Syndrome, so there has to be some good outcomes.

I would be pushing for tests to rule out Hughes as it causes 10% of pregnancy losses and complications and the chance that you have it goes up each time. Don't let your GP deal with it, ask for a referral to your local rheumatologist. If you are in London ask to see Prof Hughes (yes, The Hughes) at St. T's if you are in the Midlands, ask to see Dr Caroline Gordan at the QE. They are the best two Hughes doctors in the country, but I don't know who is available anywhere else. If you don't have Hughes the tests WILL show up something else. I emphasised the WILL because I personally don't believe someone like you is just unfortunate and the tests for Hughes are so thorough they will show up other things too.

There are two Yahoo Groups I highly recommend. One is called APLSUK and the other, APLSUK will link it to you so I'm excused if I've got the address wrong , Hughes pregnancy support. They are a brilliant resource and support group for those with Hughes. APLSUK has a member who is very knowledgeable and will most likely be able to answer any question you have, if he can't someone else probably will! They will also be able to tell you who the best doctor is in your area.

I lost my first babies (triplets they think) at 8 weeks, then lost my daughter at 20 weeks. She was born alive so they didn't PM her as your body only aborts unhealthy babies and she being born alive at that stage wasn't unhealthy. They found from that I have Hughes Syndrome. I now have a healthy 23 (tomorrow) month old who I carried to 31 weeks (but only due to having early babies and losses before) and you wouldn't believe that she was early!

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justjules · 16/06/2008 13:59

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caz55 · 17/06/2008 08:23

Thanks for all that information tinkerbelles mum. I will look into that website. I spoke with the consultant yesterday and he does not think I have this as he said 2 tests were done last year with the results being at their lowest possible so not even close to borderline. His 1st thought is that the haematoma caused an abruption to the placenta which must have been crucial to the continued viability of the baby. Whilst it would make sense because of the clots initial size I just can't shake the feeling that I lost 2 babies at a very similar time. I am based in the SouthWest.

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TinkerbellesMum · 17/06/2008 11:35

It is possible to diagnose on symptoms alone or only in pregnancy, it is a rare illness that the results mean diddly. The numbers go up and down during the day, your diet, mood, time of day and month are some of the biggest influences in what your numbers come out at.

What is your consultants area? Personally I found going to see Dr Gordon a breath of fresh air as it was the first time that I didn't have to argue with someone over the minor details. Not looking forward to seeing my old consultant next week who thought I was a low positive so didn't need Heparin (after losing Lily-Hope!) because I don't want to get into the debate again, just glad I have some of Dr Gordon's team looking after me who will agree with me.

Whether or not you have Hughes, it sounds like you could certainly use ACT (anti-coagulation therapy) next time you are pregnant.

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caz55 · 20/06/2008 10:39

Certainly my consultant mentioned aspirin but I have yet to have a proper chat with him when the test results come back.
At the minute its just trying to get some normality. The constant floods of tears are so hard and unpredictable and I hate the thought of facing all those who only last week were wishing me luck for my anamoly scan. Life cruelly goes on x

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Sausageandmash · 20/06/2008 10:54

Caz, I'm so sorry for your news - I had a missed miscarriage at 10 weeks, so can only imagine how hard this is for you.

I just wanted to say, I'm 30 weeks into pregnancy and have been on heparin/clexane and aspirin since about week 4 or 5 because of a blood clotting disorder called Factor 5 Leiden. This was diagnosed 2 years AFTER having my dd in 2004.

This may not be relevant to you but I just wanted to comment as a sort of living proof contradiction to your gp's thoughts on blood clotting issues not being a factor, because you'd already had a successful pregnancy - there's just a slim chance they might be.

Wishing you lots of luck and some good medical support.

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caz55 · 24/06/2008 21:07

Thanks for that. Do you mind me asking how come you were diagnosed with this and what is it? Sorry for the ignorance. I just feel there has to be some reason for 2 missed miscarriages that were both 2nd trimester. I know there were complications with this last one, but I had been told everything now looked fine. The thought of going through this again is too much and yet I want a 2nd baby so much I cannot bear to give up yet.
I'm having a bit of a rough night as we have a small cremation service tomorrow morning for our baby. The PM has been done but no results as yet.

Congratulations on getting to 30 weeks. Not long to go now. My fingers are crossed for you x

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minster · 11/07/2008 08:12

caz55 I'm sorry for your losses - you sound exactly very similar to me.

We lost a baby at 16 weeks 2.5 years ago (our second child) - I had a haematoma which then caused a PROM & placental abruption.

I went on to have a healthy baby - with full ACT - we had to pay for private treatment because all the tests came back negative & the NHS wouldn't fund it for me.

I'm now 16+ weeks again & waiting for a scan tomorrow to confirm that our baby has died (no hb or movement). This time we couldn't afford private treatment & since everything is "normal" the NHS assured us we didn't need it

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rubiroo · 31/10/2009 15:28

i had a late misscarrage 2 years ago at 20 weeks, it was a little boy( Rocci). i got pregnant again this year but again i lost a baby girl( Rubi) at 23 weeks, a month ago! MY partner and i are still feeling fragile, but really want to try again. We had the blood tests and they all came back neg.Is it worth going private this time?