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.

[SuziBhoy]

I dont have any advice, but just wanted to say im so sorry for your loss.

I have just had a miscarriage at 10 weeks. this was hard but cant imagine how you are feeling with this.

I hope you get the answers you need.

much love

[SweetPea99]

Hi Suzi,
Thank you. I'm sorry for you too. I think losing the pregnancy at any time is awful - and you just don't think it will ever happen to you. Do you know if there was a reason for it? Best of luck with ttc.

[BBBee]

sorry sorry sorry

I had late m/c at 20 weeks. I was lucky to be at Guys in London. There is a new(ish) test for this kind of thing called ANTIPHOSPOLIPID SYNDROME or HUGHES SYNDROME. It is related to blood clotting and midterm miscrriage. The test is cheap to do, but sadly often isn't (I have heard)

My heart goes out to anyone who has to visit this thread. Never underestimate the impact of what you have been through and make sure others don't.

You will see inner strength you never knew you had.

Love and wishes.

x

[SuziBhoy]

well sweet pea they never gave me a reason for it. Appart from "this is your first pregnancy, so it is quite common" I think im just glad everything is working the way it should, as i was beginning to doubt if i could concieve.

Things can only get better though.

x

[sadminster]

A loss at this stage really warrants further investigation

"One second trimester loss or two consecutive fetal losses before 12 weeks or three early losses before eight weeks is a reasonable guide for referral to a miscarriage clinic."

"Second trimester loss is a highly significant event. Many authorities recommend referral to a specialist regional miscarriage clinic for preconceptual assessment to exclude known causes such as cervical weakness, bacterial vaginosis and APS. About 10% of all late pregnancy losses will have two of these causes found"

I've had -
clotting - inherited thrombophilias & antiphospholipid syndrome
karyotyping - for both dh & me
hormone profile - monitored cycle
infection screen - swabs & antibodies (including TORCH)
structural abnormalities - trans-vaginal scan & HSG

[SweetPea99]

Sadminster - I'm so sorry you have had to go through all this, but thank you so much for sharing your experience. Now I can go to the consultant armed with a bit more information, and if he looks clueless then I am going to ask to see someone else. The face that you have been successful is also cause for hope.

[mum2jai]

I am so sorry for all your losses. I had to reply to your post SweetPam99 - the first time I've ever posted even though I've been reading Mumsnet and the SANDS boards for a little while. I was moved to reply to this because I am so appalled that you have had no tests.

We lost our baby boy, Jai, at nearly 21 weeks on 5 June. Like SweetPea99 we went to our 20 week scan to find that he had died. Labour was induced and I gave birth to him 11 hours later. He was our fourth baby - and although I had suffered from infertility before my first baby we had had no complications with our pregnancies.

Everyone assumed everything would be absolutely fine with No 4. My scans are done by a consultant in fetal medicine, and he was so shocked at the 20 week scan to find that Jai had died - he said it's extremely rare to lose a baby at that stage after 3 healthy pregnancies and where there are no signs of anything abnormal - he had virtually never seen it. My obstetrician said that it is like a cot death - she called it sudden antenatal death - and said in 50% of cases they don't find an answer. She thinks it'll be 50 years before they do. Even knowing this, she urged me to have a post mortem and a full battery of tests. There are infections like CMV, which can be asymptomatic in the mother but can cause the baby to die. The preliminary post mortem findings for Jai show that he was perfect but we are still waiting for the results of the other tests. Which isn't easy.

I don't know if you had a post mortem done, but one of the problems is that after the Alder Hey retained organs scandal pathologists don't want to do paediatric or foetal/perinatal work, so it can take ages for them to be done. And so not all hospitals encourage parents to opt for a post mortem, even though that's probably how in the future they'll find out what causes these late losses. I couldn't bear the thought of Jai having a post mortem - it was the hardest thing I've ever had to agree to - but I know it was the right thing to do. Even though they probably won't find an answer for us, it may help them find an answer in the future - and who knows may be it will prevent this happening to my kids when they are grown.

Sorry for the long post - perhaps if I posted more frequently, they would be shorter!!

[SweetPea99]

Hello MumtoJai,
Thank you for your post - I'm so sorry this happened to you too. Hearing from people like you who have had a battery of tests is really inspiring me to make some noise, (even though I don't particularly want to). Even after nearly 3 months the sadness isn't going away, and I think it's because I know that I have to do something instead of stick my head in the sand.
I hope you get some results that will help you to deal with it.

[jellybeans]

Hi, I am very sorry for your loss. After my m/c at 20 weeks last year, I had loads of blood tests (clotting, TORCH infections etc) and also had a post mortem (which we too found very hard) and chromosome testing on DD. (DD and I had already had our chromosomes done as we sadly lost a DD to a chromosome disorder a few years earlier). My tests were positive for Hughes syndrome, placental infection and also was told I may have incompetent cervix. So I am not 100 % sure what caused my loss but they did run all these tests and I think they should be routine as it can affect future health/pregnancies etc and help you come to terms with the loss eventually if there is 'a reason'. Take care xx

[unfitmother]

Very sorry to hear of your loss SweetPea, I lost DS2 in similar circumstances 9yrs ago.
I had an amnio the day before my induction and a post-mortem which revealed something called Dandy-Walker Malformation.
I honestly can't say whether finding a reason helped us or not but at least we had a choice on a pm.
Best wishes.

[mum2jai]

Sweetpea I'm so sad to hear you are still so sad - exhausting isn't it.

It's been nearly 2 months since we lost Jai and I think about him all the time. I find the thinking is so tiring.

But my friends remind me, and I think it's true, that 2 months, or in your case 3 months, is not very long to get over a trauma like this. Perhaps it's a good sign that you are thinking about pushing for further investigations? A sign that you are using your energies in a positive way?

You asked about going private. We always have done, for a variety of reasons. I think it's worth it because you get to choose who you want to see, and you get time to ask questions of an experienced medic. And if you choose the right person, they don't mind justifying their advice. Can I ask where you live? If it's London, there's a few good people we know.

[SweetPea99]

Hi MumtoJai,
Thinking is exhausting. I'm just going back to work tomorrow and of course it is bringing all the reminders that I would rather just shut away. I have unhappy memories of work in the pregnancy and being so exhausted and feeling sick all the time .

I do work in London, although I commute so I dont live there, but maybe it's worth seeing someone in London to get me through the first 2 trimesters? I would be grateful for recommendations.

I hope you are right and that 3 months isn't long to get over the trauma. I am getting on with things, but I feel like I'm just putting a brave face on it.

Thank you for your thoughts and experiences, Jellybeans, Unfitmother, BBBee.

[mum2jai]

SPea Good luck for tomorrow. It's a huge step going back to work and you need to go easy on yourself. I went back to work after nearly 4 weeks - and while I was off, we had moved to a whole new building and had gone from having our own offices to open plan and hot desking. I was terrified and I couldn't see how I could possibly function - and certainly not at the level I was before Jai was born - esp as my job entails long hours and is pretty stressful.

Plus I'd only just been promoted when I found out I was pregnant with Jai and clearly my boss thought she had appointed someone who had finished her family so she was less than warm about my news.

Having said that she has been pretty supportive, and the rest of my colleagues have been amazing. I found it helped to make sure that everyone knew what had happened so that I didn't get asked upsetting questions like whether I'd had a good holiday, or had got over my cold. It also helped that I enlisted a couple of people to look after me (take me for lunch or coffee or a cry).

And you know what, being back at work has been fantastic for me - tiring but fantastic. It makes me realise that my life hasn't come to an end, that I do still have a future that can be bright even without my baby.

My obstetrician is a friend of the family. Her name is Katrina Erskine at the Portland - she is truly wonderful and I couldn't have gone through giving birth to Jai without her. She's also delivered my other 3 and my sister's 2. She is very busy though, so not sure she's taking on any new patients - but worth a try. She also works with a couple of other obstetricians Frederika Eben and Pat O'Brien. Both are great but I particularly like Pat - he's quite young, but utterly calm and kind. He looked after me 2 years ago with my third who was delivered by Katrina but a few days afterwards developed really, really bad jaundice - Pat was wonderful. And he's very clever which I think helps because I've found him willing to discuss the science of things. I imagine he'd be really good in your situation.

Good luck again for tomorrow. I'll be thinking of you.

[SweetPea99]

Hi MumtoJai,
Thank you for your support - I read your message yesterday morning, and it really did help. It was horrible going back to work, not because I didn't want to see people or deal with the pressure, but because it brought all the memories back, and the thought that last time I sat at my desk I was pregnant and happy.

Anyway that's done now, and I feel much better, and, like you, I'm glad that I've got something to focus on. Thank you for the names. I am going to try the NHS route first - I spoke with my GP again, and the guy I had originally been referred to was apparently just a gynaecologist, so I have insisted that I be referred to an obstetricician (you would have thought that would have been the obvious thing to do in the first place ).

I will update this thread so that anyone who goes through this in the future will know what tests they should get and how they should be cared for, instead of trusting that they will be given the right information, and referred to the right people. Thank goodness for mumsnet, or I would have never known that I could get help!

[pwcbird]

Hello. I posted this on hope4future's message but hadn't seen this more recent one.

I lost my baby a week ago with a 'missed' miscarriage. I was 22 weeks and went for my anomoly scan only to find the baby had died at approx 17 weeks. I was also induced and had to deliver. It's been very hard - the whole experience was such a shock. My only symptoms were that I was a bit concerned that at 22 weeks I hadn't really felt the baby and 2 days before the scan I started to get cramps, though thought they could be ligament pain. I was a bit anxious but never thought the baby would have died. I'll never forget that awful moment in the scan room. We've asked for a PM and will wait and see but like you've said no-one really tells you anything or offers any alternatives to testing. The nurse simply said 'these things happen' (not very helpful). Once you get past the 12 weeks you think it's going to be ok don't you? Sorry not to offer any advice but wanted you to know that there are others here(sadly) going through it. Dh went back to work yesterday. I'm a SAHM with DS who is almost 2yrs. He keeps me sane (just) but it's so hard to understand why this has happened.

[SweetPea99]

Hi Pwc,
The shock is shattering isn't it? It was my first pregnancy and I had been feeling so ill I thought that it must be a healthy pregnancy, and when the sickness finally eased up I was so happy.

I don't think 'these things happen' is right at this late stage. I have read, and seen on other MN threads, that a loss after 13 weeks only happens to between 1-2% of pregnancies.

I'm sorry you are going through that horrible early phase of shock and trauma from the delivery experience. I think it does ease given time, but if you are like me, you will be replaying that moment in the scanning room in your head over and over again at the moment. I suppose your mind needs to examine it from every angle to try to make some sense. Look after yourself and your DS, but try to find some space to cry as well.

[mum2jai]

SPea glad you got through yesterday.I was thinking of you.

Pwc so sorry you are going through this, and so recently. It's hell. And, like SPea, I definitely replay in my head - but I do think that's what your mind does to start getting over the shock and, hopefully, on some level, to learn to live with the pain.

Until very recently I would think I had felt Jai moving - and that I found heartbreaking. My consultant had warned me that I might hear him crying. Thankfully that hasn't happened, but at the weekend I suddenly started producing milk - which feels very, very cruel.

I too hadn't expected the baby to have died. I had a bit of bleeding the day before the scan and I had said to DH just before we went in that I hadn't felt the baby move as much as I thought I would, but it seemed a very remote prospect that he could have died.

We were told that this is extremely rare - and that they were really surprised it had happened. They told me that by this stage you could drink a bottle of vodka and this wouldn't happen.

Be kind to yourself. How is your DS reacting? My youngest had just turned 2 when Jai died, but he knew that something awful had happened, and kept asking if I was alright and running off to bring me tissues (or sometimes lego if he got distracted!). Do make sure you get lots of rest and lots of help with DS.

Thinking of you both.

[sadminster]

I should be 20 weeks tomorrow will be visiting Toby's grave.

I have that phantom baby movement too - it is extremely odd.

I'm trying to get referred to the Silver Star Unit in Oxford - sadly I meet theire referral criteria in about 5 categories.

[SweetPea99]

Sadminster - . I hope visiting Toby's grave helps. I find I build myself up for that sort of thing, almost in hope as though something is going to improve, but of course the baby doesn't come back. It does help though, I think it gives a little meaning to something that can seem so meaningless.

All that we can do is make sure we have done everything possible to try to stop this happening to us again. You are obviously extremely deserving of the referral to Oxford - don't take no for an answer.

[Hope4Future]

Its just over two weeks since we lost the baby, and I can relate to a lot of the feelings expressed on this thread.

I have heard nothing from the midwife, doctor or the hospital since I was discharged. I don't know when the PM results will be ready, and have not been told about a preliminary report. I am starting to worry they never actually did it, although we did sign the forms etc.

Can anyone tell me when I can expect a response re. testing and PM results? Or do you think I need to push for it?

The problem is I miscarried while away from home for the weekend, so the hospital doing the PM is not my local hospital...and the local hospital probably know nothing about what has happened.

[cece]

I am sorry to read of your loss.

I lost my baby at 18 weeks and had a post mortem for her. Although it didn't give us any answers. I also had blood tests to see if I had any infections which might have caused her death.

[pwcbird]

hope4future I am in the same boat. It will be two weeks on Tuesday for us and I think it's cruel the way you are sent home and then nothing. No information. I've decided to go and visit my gp in a couple of weeks and talk everything through with her and see if she can shed any light on the situation and timing. They don't do pm's at our hospital and so ours has to be sent to a neighbouring hospital. I don't expect anything for at least 4-6 weeks, mayhbe longer. I'm just guessing though.
I had a terrible day on Friday - cried on and off all day with the never ending question of 'why?'. Why did it happen to us? Why was it a 'missed' miscarriage so I thought I was 22 weeks pregnant? Why did I have to go through all that? Why is it so unfair? etc etc. I know I'm so lucky though to have ds jumping around keeping me active and smiling and must keep positive for him.
I just hate the way we're left and then nothing. I was very ill at the time that they think the baby died (had a terrible bout of sickness - really, really bad) and did visit the gp at the time who said not to worry about the baby as I was past the danger time (she didn't listen to the heartbeat or anything). Now I just don't know if it was the illness that made the baby die or if the baby dying made me ill or if it was none of those things. And I'll probably never know. It's awful.
Anyway, I'm trying to think and be positive - we hear endless stories of further pregnancies being ok and so have to keep alive the hope that it will be so for us.

[mum2jai]

All - posted already on the other late miscarriage thread about PMs so you may have already read about my experience.

We were warned that it takes ages to get PM results - thank heavens we were but it was still awful waiting. Our baby was sent for PM the day after he was delivered on 5 June and we got preliminary results by phone the week after saying everything looked normal (not sure if all hospitals do that).

But it has taken 2 months to get the full report (just last week) - this is partly I think because they have to do histology and microscopy - and it can take a while to prepare slides/do tests etc. But it's also because of a lack of pathologists so they are really stretched (which is why some hospitals don't do baby PMs). I think we are still waiting for some blood results - I'm going to chase next week - but I suspect they were normal or we'd have heard. Also from the PM report we know that some things they were testing for have been ruled out.

I think it's worth pushing for things. At the very least getting the GP to phone the hospital where it was done, or, perhaps better still, phoning yourself if you are up to it. I've found that generally people are pretty supportive/more helpful than they would usually be in circs like these.

[jellybeans]

(((hugs))) everyone. It took 3 months for our PM results to come through which was very hard. They didn't show much more than we knew already (knew had an infection). We were told that it could have been infection, hughes syndrome or cervical weakness.

[sadminster]

Do you have a bereavement midwife? In the 4 weeks since Toby was born we've been in contact with her at least a couple of times a week. She's called us when we got home from the hospital, when Toby went & came back from PM & after the funeral. We call her with every little question we can think of ... last time it was to make sure we would only see the consultant at our follow up & that they would have a copy of the PM/blood results for us to take away with us. She's never made us feel like we were a nuisance.

If you have one don't hesitate to call her - honestly it is one of the few things keeping us sane - it gives you some semblance of control back & it's so horrible not knowing what's going on.

We were told 6-8 weeks for all blood test & PM results to be back - including all the virology which can be slow. Luckily we've near the JR where they have perinatal pathologists so Toby was only gone for a day & the results seem to come back relatively quickly.