Late Miscarriage - What tests did you have?

[SweetPea99]

Hello,
This follows on from Hope4Future's thread but I wanted to make the question very specific.

We went to our 20 week scan in May and discovered that there was no heart beat. Our baby had died about 2 weeks before (when I thought that the sickness and nausea had finally started to go ), I had an induced labour and finally delivered about 16 hours later.

We were told that post mortems rarely give any results (?) so our health authority doesn't do them. The only test we had was a genetic one, which showed that she didn't have any chromosomal problems. She was also exactly the right size for her dates.

Since then we have not been offered any tests or follow up, although the consultant said that he would see us at 15 weeks in the next pregnancy to swab me for infection. I have since spoken to the miscarriage assoc. and my GP who both seemed a little surprised that no tests had been done. The doctors seem willing but not well-informed. I don't think the consultant was a proper baby guy because the lady he saw before me was about 90!

What I need to know is: What tests should I have? What should I be asking for? Has anyone gone private?

I am now thinking about ttc again, and it has really brought it home to me that I cannot just sleep walk into this hell again. Thank you for any advice you can give.

godwin

so sorry to hear of your losses, I hope you find mn as much of a help as I have in the past few weeks.

Have you heard of sands?

www.uk-sands.org/

There is a support forum on there for 'late miscarriage' along woth various other threads. I think you may find it useful too.

Take care x

Hello Godwin, I'm so sorry to hear what you have been through.

I don't see (not that I'm an expert) how the placenta can be to blame each time unless it's a very tragic coincidence because the placenta is the only disposable organ in the body (when it's not needed, IE the end of pregnancy, it's discarded and when a new one is needed a new one is made). The fact that there was a bruise on your placenta could indicate that there is a clotting problem. If you do have something like Hughes Syndrome then the Aspirin wouldn't have been enough in the second pregnancy. If all else fails insist your doctor refers you to the local Rheumatology team.

Hope4Future that's why I refused a PM, I didn't want her cut up needlessly when it was obviously my problem not hers. They could find something, if your body had been attacking him then he could show signs of that, will they test to find out where it came from though? Like you say they could stick with a single answer. Do some research (try the Hughes Syndrome Foundation, which is Prof Hughes's site) into Hughes, it's not hard to build up a profile of how you could be suffering from the disease because it causes so much. Take your findings to your GP and say you think you could have it can s/he please send you to the rheumatology clinic (don't let a GP test for it because it needs to be tested in hospital so it can be tested within a time limit - about 15 mins I think - and GP's don't generally understand the disease well enough). Even if you haven't got it the tests will be quite far ranging and should pick up if there's anything else lurking in there.

Godwin - so sorry to see another new face here and so sorry for your loss. I hope you find the support you need here and in RL.

There's a lot to take in isn't there, especially when you are still getting over the shock of losing your baby.

I don't want to bombard you with information but I too have been wondering what they can tell from testing the placenta. As I understand it if you have a clotting disorder that caused the baby to die, they will find a certain amount of thrombosis or infarction in the placental blood vessels. And that's why it's important that they test the placenta. Also sometimes the baby will show signs of a thrombosis which also confirms it. And they can tell from testing the placenta and your blood whether you have the antibodies associated with clotting disorders.

Thinking of you.

Godwin, just reread your post. My first MC was triplet at 8 weeks too. I think that because the antibodies are raised in pregnancy that the extra babies in there cause them to raise even more so they're lost a lot sooner and that's why I got to 20 weeks the second time.

They're not likely to test the father unless they think it's different blood groups or some genetic problem, but they'll try to rule out something wrong with you first because that's far more likely. Reading your story I'd go with the idea you could be autoimmune. Do your own research into it (especially Hughes) and take your findings to your doctor.

I just want to say, I know I might seem like I am kind of biased towards Hughes but it causes 10% of first time pregnancy losses and goes up on second time losses, third time losses etc. It is a very nasty disease, it's the only one that will attack everything in your body - most have a specialism - and can cause other autoimmune diseases. It doesn't have one test, it can show up on any number of tests - when we say a LAC screen or LAC test, that's a lot of tests! It can also show up on no tests and you can still have terrible symptoms, this disease doesn't believe in numbers or borderline or low positive or high positive, if you have it you do. The range of tests means that even if you don't have it they will pick up on anything else that's going on. If you do have it, despite what some Obstetricians and MWs think, it's not a pregnancy illness, it is with you for life, it affects men too! Your children and siblings have a risk of 1 in 10 instead of the 1 in 500 you had. There is also a chance one of your parents could have it meaning your aunts, uncles and cousins could too. It's not a disease like others where it's carried for a few generations, it creates itself! So you really could be the first in your line to have it. Since being diagnosed I have found out that the reason I faint a lot is because I'm having TIAs (mini strokes) I have had five in a day! I also have Raynaud's, a weird form of dyslexia (I knew about it but now I know where it comes from) and I have a whole range of other symptoms. Do you suffer from problems in supermarkets - find yourself moving really slow, picking up the wrong item, getting anxious or having panic attacks - or with the indicators on the car in front? That's possibly Hughes.

Just been reading Graham Hughes's website and thought I'd share this with you (sorry for misquoting figures before, it's been awhile since I'd read them, I'm kicking myself because I know this rule):

How common is the Syndrome?

----------------
In the world of obstetrics, Hughes Syndrome is now recognised as the most common treatable cause of recurrent miscarriage.

From the world literature to date, a rough ?1 in 5? rule applies: Hughes Syndrome accounts for approximately:
1 in 5 Deep Vein Thrombosis ('DVTs')
1 in 5 young strokes (under 45)
1 in 5 recurrent miscarriages

Add to that the as-yet unknown number of migraine, Alzheimer?s and Multiple Sclerosis sufferers who actually have Hughes Syndrome, then the prevalence figure in the population could be as high as 1 in 500 individuals ? truly one of the ?new? diseases of the late twentieth century.

More:

Pregnancy problems
----------------
One miscarriage is a disaster. Two is worse. Imagine the suffering of women who have 3, 5, 7 or even 12 pregnancy losses, and sometimes as late as the last few weeks of their pregnancy.

We now know that Hughes Syndrome is the most common treatable cause of recurrent miscarriage: depending on which study you quote, the figure is up to 1 in 5. Furthermore, late pregnancy loss, fortunately an unusual problem in pregnancy, is very strongly associated with Hughes Syndrome as is pre-eclampsia, placental abruption and intra-uterine growth restriction.

For the sake of a simple blood test, patients with miscarriage or late pregnancy loss can be tested for Hughes Syndrome. Treatment of these patients has proved one of the true successes of modern medicine, the successful pregnancy rate rising from a previous low of fewer than 20% to figures now in the region of 75-80% success rate. Treatment is with low-dose aspirin and/or heparin.

Don't mean to spam you ladies, I just keep finding interesting things to share. This is how to diagnose it, a few people here have said they have enough for a diagnosis and been told they don't have it. Highlighting my own:

Clinical criteria

1. Vascular thrombosis

? One or more clinical episodes of arterial, venous, or small vessel thrombosis, in any tissue or organ. Thrombosis must be confirmed by imaging or Doppler studies or histopathology, with the exception of superficial venous thrombosis. For histopathologic confirmation, thrombosis should be present without significant evidence of inflammation in the vessel wall.

1. Pregnancy morbidity

? One or more unexplained deaths of a morphologically normal fetus at or beyond the 10th weeks of gestation, with normal fetal morphology documented by ultrasound or by direct examination of the fetus, or

? One or more premature births of a morphologically normal neonate at or before the 34th weeks of gestation because of severe pre-eclampsia, or severe placental insufficiency or

? Three more unexplained consecutive spontaneous abortions before the 10th week of gestation, with maternal anatomic, or hormonal abnormalities and paternal and maternal chromosomal causes excluded.

Laboratory criteria

Anticardiolipin antibody of IgG and/or IgM isotype in blood, present in medium or high titre, on two or more occasions, at least 6 weeks apart, measured by a standard enzyme linked immunosorbent assay for ß2-glycoprotein 1-dependent anticardiolipin antibodies*.

• Most laboratories only measure the anticardiolipin antibody. Although the 'extra step' of ß2-glycoprotein 1 is correct in scientific terms it is time consuming and only positive in a minority of patients. Hence it is not generally included in routine testing.

1. Lupus anticoagulant

Lupus anticoagulant present in plasma on two or more occasions at least 6 weeks apart, detected according to the guidelines of the International Society on Thrombosis and Hemostasis.

Definite Hughes Syndrome (APS) is considered to be present if at least one of the clinical and one of the laboratory criteria are met.

Thanks TBM,
This is really useful. I am going to request these tests and direct the consultant to the website if he doesn't know about it. It looks as thought these tests should be standard for any late loss (Lesley Regan also agrees they should be in her book). The first consultant I saw suggested junior aspirin 'just in case', but if there is an identified problem, then it seems that a junior aspirin is unlikely to be enough, and you need to take heparin as well.

For myself, I really hope that the tests are negative and it was just 'one of those things', but I couldn't forgive myself if I didn't push for the tests and it happened again.

Spoke to a friend yesterday who had a baby girl at the start of the year and seemed completely unable to understand that this was not 'just' a miscarriage (although even an early loss must be awful). It's strange how the people you think should be full of compassion just don't seem to get it. You would have thought that she might understand that my little girl could have been just like hers, in fact they would have been friends . I was standing on the street talking on the phone and, I'm not joking, about 5 pregnant women walked past in the space of about 3 minutes . I mentioned it to my friend, and she said, 'oh yes, I always used to see pregnanct women everywhere when I was pregnant'. Not the same! Reading this back it looks like such a petty quibble, but it's quite hurtful when someone close to you doesn't seem to be making any effort to understand.

Tinkerbellsmum - Thanks for all that info, it can be hard to digest, but i have been on hughes website in the past, i requested all the blood tests that seemed necessary, phlebotomist took 10 tubes! Aparently all was as it should be even anti cardiolipin etc, i have seen the results myself. I was interested to read about Dr Goran at The QE in Birmingham, we live in Worcester, do i need to be referred or can i make an appointment myself? Regarding any unusual symptoms, i generally have good health i need a couple of decent nights sleep a week and if i don't eat regularly i do feel faint. I have had occasions when i feel like the world is going on without me but not sure if that is a symptom of anything or just me being me!my mother has a disease called schleroderma but it is not hereditary. My dh and I are convinced there is a problem with me due to the fact that I have carried two babies to term in the past and they are with us now and very healthy, i feel so frustrated that i can't seem to carry babies anymore, i need answers, my folllow up with consultant is not for another 7 weeks or so. Thanks so much for all the information everyone. Take care.

Hello everyone, hope it's ok to jump in on your thread,
just wanted to say that after so many mc's and mmc i looked into having more tests etc as we all want/need answers!!!

The London Lupus Centre which is based at London bridge hospital in London is the where leading experts in this field work.

Dr David D'cruz and Dr Munthur Khamashta both specialise in Hughes/APS and Lupus, i have seen them both and they really know their stuff. The telephone number for this hospital is:
02072342155(i think the consulatation cost me about £150)

Alternatively you can ask your GP for a referral to see them on the NHS at St Thomas's Hospital in London (Prof Hughes works here as well, the man who identified Hughes!) but you have to wait a little longer for this.
Hope this helps someone.
Best wishes
sueXXX.

I worked with David D'Cruz when I was doing ARC funded work - he's fabulous, one of the most compassionate doctors I know.

SweetPea99 more than that, it should be standard for pregnancy! I'd like to see every loss as a start.

I was tested for Sickle Cell and Thalassemia when I was pregnant with Tink, I'm white and most of my background is Celtic. I don't mind the test as none of us truly know our cultural background (Colin Jackson is a good example of that!) but I and every other woman has a high possibility of having Hughes Syndrome - higher for most of us than the other two - and if we do it means we could lose the baby. Seems more important to me.

Godwin, I take it you mean Caroline Gordan, she's one of the best, living away from London I wouldn't want anyone else! I'm fortunate that I had my babies in The Women's so they automatically sent me to see her and her team cover me for pregnancy too. You should be able to get a referral on Choose and Book if you ask your GP. Not sure if you can refer yourself. If you can get to see her you will know you are in good hands. She knows all her patients notes inside and out. My sister was sent to her because she may have it too and her GP thought seeing my consultant would be best. She told Dr Gordan that she was referred because of me and she reeled my history back at her! She didn't even know before she went we were sisters and my sister has a different name to me.

The chance of carrying to term is less than 18% so you could be one of the 18%. Once you'd lost a baby (if you have it) you wouldn't be able to carry a baby without Heparin.

One thing that I was quietly thanking Dr Gordan for was that she didn't say "you're only borderline" which everyone else had. She understands that the numbers don't hold much relevance.

hi,
i just wanted to add my support and send my love to you all who have lost babies, i know how you are feeling.
August 12th last year I lost my little boy at 18 weeks, I had taken 3yrs to conceive & had already had an early miscarriage. A few days before i lost him I'd started having contractions which went on for 3 days on & off & the hospital did swabs took bloods & scanned me, these subsequently came back clear & baby was fine, finally though the contractions worsened and we lost him. Lying in my hospital room for the next few days I watched out the window as people took their new babies home and thought my heart might break.
We agreed to send Thomas for a P.M and when the results came back it showed I had had an ascending infection which caused the contractions, although I'd had no symptoms, but Thomas had been perfect.
A few months later I had some abdominal pain & bleeding & my g.p sent me for a scan with a suspected ectopic pregnancy, but as they scanned me (i couldn't look) i heard "there's the heartbeat'.
The pregnancy was so stressful even though I was put on aspirin & cyclogest, scanned often & saw the consultant all the way through, then again at 18wks I woke up covered in blood & thought thats it,its all over. I was scanned the next day and amazingly the baby was fine, though I was put on bed rest from then on.
My little girl is now 14wks old & I can't believe I've got her,
I hope my story gives you some hope. The pain never goes when you lose a baby, they're never replaced.
but it means you never take anything for granted again, and a year from now things might be very different,
I wish you all the luck in the world xx

charlie91

That is a really heartwarming story, thank you for posting it. Sorry for the loss of your little boy, but I am so happy ot has worked out for you.

Can I ask why you were on aspirin and cyclogest, whether it was related to blood test results?

Your story is very similar to mine, and I wonder if it came back as infection that they will just put it down to bad luck and offer no more support. I'd like a belt and braces approach next time!

Hi Hope4Future,
Yes, they did put it down to bad luck but they were also unsure whether or not i had cervical incompetence so they scanned me regularly, i turned out not to have.
The consultant i saw put me on cyclogest & aspirin just to be on the safe side & said that the cyclogest wasn't proven to help though it couldn't hurt, also with the aspirin, they didn't think i had blood clotting problems but they thought it wouldn't hurt for me to be on it.
I've got to say I was terrified all the way through, and kept saying to the dr's that my infection had not been picked up by the swabs so what was to say i wouldn't get another one that went undetected! They just kept saying if you get any unusual discharge to get it checked, not really much help as i hadn't had anything unusual, though I did go for loads of swabs, probably every month this time round.
From what I can tell you get consultant care next time around when you've had a late m/c, and they did seem to take all my (regular) concerns seriously and hopefully it will be the same for you, otherwise I would consider going to a different hospital. Good luck x

I had my first miscarriage at 20 weeks. The baby was born alive. I was offered a PM on the baby but didn't want to have one. I also had blood tests and swabs taken but can't remeber what they were testing for. I didn't have a PM as I knew thay probably wouldn't find a cause of the miscarriage by doing so. My consultant suggested that I may have an incompetant cervix.

I had a second miscarriage at 16 weeks (after haing 2 full term babies). I have a postmortem on the baby but it's didn't show any causes of mc but I had measles at the time and had a cervical suture inserted just four days before so I wanted to know if the baby had any type of infection.

Unfortunatley most of the time it is down to bad luck.

Aspirin has been proven to reduce the incidence of miscarriage, even with someone without a clotting condition. Cyclogest helps to get a pregnancy going longer when a previous loss was idiosympathic (unexplainable).

goingfor3 I checked that hadn't been copied from one of my posts! You were right that the PM wouldn't have shown anything, a sick baby doesn't survive birth, a strong baby does. Sadly most losses are explainable. 1 in 5 are Hughes Syndrome, 1 in 10 are Turners, that's 30% before you add in other conditions - IC, incompatible blood groups, other autoimmune diseases etc. This is why I get so angry at the idea of making a woman lose 3 babies before testing for things.

I have a friend who comes from a family of recurrent miscarriages. She had lost two babies and begged to be tested for things based on family history. They said not till she had had another loss. How do you get pregnant knowing you will lose it?

I had so many blood samples taken whilst in hospital delivering Ellis (it must have been about 10 tubes), I know they were going to test one for signs of pre eclampsia but I have no idea what the rest will be tested for - I hope from reading on here that one will be for Hughes Syndrome (from reading on the website I can tick one or two boxes).

I've read up on most chromosonal conditions, a lot of them mention markers. I had an indepth scan at 17wks by the consultant as my triple test results were high. He didn't see any soft markers for downs syndrome (I'm sure he would have checked for other syndromes too), amnio came back all clear for downs syndrome. But maybe the high triple test was an indicator something wasn't right, whilst I was there the cons asked if my dates were right so perhaps Ellis was already measuring small - something may already have started to go wrong.

After that I kept getting brown discharge, which now after googling (yes I know...) says is an indicator of threatened m/c but he was still alive & well. His small size when born does seem to suggest there was def a reason why it went wrong.

If say it was my placenta or incompetent cervix (have had loop treatment so is a possibility), do you know if this is likely to happen again?

The next 6 weeks can't go quick enough, I must start writing all my questions down so I'm prepared when we see the consultant.

Charlie - Thanks for posting your story, I'm sorry for your loss but its so nice to hear that everything went well with your next pg.

I hope we are all as lucky next time x

pickle, someone else said they're consultant told them that a high + triple test result can be because you have Hughes Syndrome, if baby was OK with a high + it could be that. Small baby could also be explained by it as the placenta is under attack and the baby won't be looked after well.

IC would definitely be looked after next time. There is no way of telling though. They can look at how your baby was born (for example I was in labour for 27 hours which is too long for it to be IC) and do cervical length scans during your next pregnancy (I have one on Friday [gulp]) but that's it really.

I've had 11 vials a time taken, I was passing out and my veins closing when they did it!

Thanks, I will def mention Hughes Syndrome to consultant. And the possibility of cervical scans.

I didn't realise I was in labour, it all happened quite quick. The hospital timed it as 6 hours (Ellis came out breech so it took a bit longer to deliver him), plus 2 hours for placenta before I was taken for ERPC. This is when they took first lot of blood samples, I was so out of it by then anyway - ended up fainting in theatre! The mw then tried to take blood a few hours later but couldn't get my vein so registrar came did it... it hurt!

I never took being pg for granted as my mum had 2 mc (one at 12 wks & one at 8 wks) but I don't think I'll truly relax until my baby is screaming in my arms.

x

I don't know how long it takes to deliver with IC, I'm not sure it's so much of labour though and more that the baby sags out -IYSWIM.

I didn't know either time I was in labour, looking back I knew when it was and what was happening but at 20/31 weeks you don't think "I'm in labour" at most you put it down to BH.

It's worth making sure you are educated before seeing your doctor so you know what to expect and ask for. I posted a thread with a few good links for Hughes. Please feel free to reply and bump it up a bit!

Tinkerbellesmum - thinking back to triple test, I was high risk of downs syndrome so I think that means low AFP levels.

I started to write a few questions down today, it will a long list by the time the appt comes around.

x

It is low levels for Down's but I have no idea how that works with Hughes, it was something said to someone on this thread by their consultant. I've posted on APLSUK but not had a reply to it. The resident expert has left the list for some reason.

Hello all you girls..some of us lost our babies as stillborn and some not..

I supposedly did not have a disease or any other type of disorder.. I looked up the term for the first time the other day - and it is called AMNIONITUS... basically the rupturing of the placenta/waters breaking due to an infection.

It was 23rd December last year, I was pregnant with my first- a boy - at the age of 39 and ecstatic! In the middle of the night I got up to go to the loo and I thought I was incontinent as the fluid just flowed out of me.. Again later at 5 am in the morning at which my husbank arranged to take me through to a local hospital (we were on holiday) A scan showed my baby was perfect (at 20 weeks) but no amniotic fluid - it had all drained out. After blood tests, it was confirmed I had an infection and they to induce me. The shock of going through labour and giving birth to my son - still haunts me today!! You never get over this and I still have days when I am depressed and know that it is my son that I lost..

After get biopsie from my son, I have never learnt more from my gynaes other than it was an infection - probably from my vagina - that caused the infection in my uterus that caused the amniotic fluid to drain.

Now how do I deal with going into a second pregnancy (I think I am ...will find out next week for sure) NOT knowing how I can avoid this happening again..!
If anyone can shed some light I will be grateful. My doctor says..."it is just one of those things that happen..." But I fear I am going to be a neurotic women wondering if it will happen again..

hmm

Fifty - Pg is anxious enough time for any mum to be, but given our experiences it will be more so. Hopefully you will be closely monitored, if this is not offered, make sure you ask. This may help to ease some of your fears.

Hope you got a positive result.

The wait to find out the results of the pm & my results is really getting to me, keep imagining all sorts.