Late Miscarriage - What tests did you have?

(145 Posts)
SweetPea99 Fri 01-Aug-08 10:48:31

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 sad), 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 Fri 01-Aug-08 16:22:01

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 Fri 01-Aug-08 16:53:20

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 Fri 01-Aug-08 16:57:18

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 Fri 01-Aug-08 17:02:42

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 Fri 01-Aug-08 19:33:33

A loss at this stage really warrants further investigation angry

"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 Sat 02-Aug-08 09:34:00

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 Sat 02-Aug-08 11:16:49

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 Sat 02-Aug-08 17:20:33

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. sad
I hope you get some results that will help you to deal with it.

jellybeans Sat 02-Aug-08 17:32:24

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 Sat 02-Aug-08 17:45:10

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 Sun 03-Aug-08 01:14:13

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 Sun 03-Aug-08 19:11:23

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 sad.

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 Sun 03-Aug-08 22:05:40

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 Tue 05-Aug-08 08:51:31

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 angry).

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 Tue 05-Aug-08 13:59:29

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 Tue 05-Aug-08 15:09:51

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 Tue 05-Aug-08 19:22:19

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 Tue 05-Aug-08 19:56:29

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 Wed 06-Aug-08 08:56:29

Sadminster - sad. 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 Sun 10-Aug-08 10:19:37

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 Sun 10-Aug-08 10:33:44

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 Sun 10-Aug-08 11:33:18

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 Sun 10-Aug-08 12:11:05

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 Sun 10-Aug-08 12:35:35

(((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 Sun 10-Aug-08 17:16:41

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.

sadminster Sun 10-Aug-08 17:22:50

pwcbird that is exactly what happened to me - I had been starting to feel better the weekend before; then on Monday I had sickness (solidly for four hours), diarrhoea & a fever. I was worried so I listened to Toby's hb with my doppler - it was there 155bmp, 20 slower than usual (I torture myself with thoughts that he was dying at that moment). I was still worried later in the week, but was fobbed off with everything will be fine - despite the fact that they couldn't find a hb on Thursday (I knew he was dead then). They wanted me to wait until the 20 week scan (3 weeks later!), so we booked a private one which confirmed he had died. I was showing no signs of going into labour & if I'd followed their advice I would have been i the smae position as you - turning up to my 20 week scan to be told the baby was dead.

It is just so sad.

Hope4Future Sun 10-Aug-08 19:02:41

Thanks for all the responses. I think I will call the hospital next week to see what they say. I haven't had any blood tests since it all happened- do they wait for the results of the PM before they decide what further tests/investigations to do? or do you have to wait for hormones etc to settle down before any tests are done- does that make a difference?

I just feel I am waiting at the moment- I don't know if the PM will tell me anything, but in the meantime I am running over things in my head again and again just wondering what could have happened, what could have caused it, coming up with 100+ theories. Its all I think about, and I know it won't get me anywhere. Back to work this week so hopefully that will help occupy me!

SweetPea99 Mon 11-Aug-08 15:52:55

Sadminster, PwcBird,
I too was sick around the time I lost the baby. At first I thought it was morning sickness, but when I kept throwing up I realised it must be something else. I had diarrhoea every day through the pregnancy so that wasn't any different for me. Like you I don't know if I was sick because the baby had died, or if it was the cause. The doctors say not, but as I haven't spoken to anyone who knows anything yet, I am suspicous, especially as it has happened to 3 of us.

Hope4future, PwcBird, I visited my GP afterwards, and she was very sympathetic, but didn't offer anything. It was not until I specifically asked for a referral to a specialist that there was some movement. That appointment has just come through for mid-Sept (4 months after I lost the baby angry). I have armed myself with Lesley Regan's miscarriage book and will be demanding blood tests for APS and any relevant tests for infections.

It's probably too early for you guys to be facing this - you must both still be in shock, but when you are ready, it is worth knowing that you will have to make some demands and tell the GPs what they should be doing - I really think that half the time they are willing, they just don't know.

Slickbird Mon 11-Aug-08 16:04:39

This thread caught my eye and I couldn't visit without sending you all hugs and best wishes for the future. I can't even imagine how hard it must be for you. sad

xx

taliac Mon 11-Aug-08 16:34:41

Sending lots of love and sympathy.

We had 3 m/c before we finally had DD1. The 2nd m/c was late at 18weeks.

We were under the care of UCH, and so were pretty decently looked after. They ran tests on me, and on the baby but didn't find anything. Its a while ago now so I can't be specific, but I know they were looking for infections, blood clotting disorders etc.

They referred us to the recurrent miscarriage unit at UCH, and these are the things I remember.

1, they very often don't know why it happens. There isn't usually a good reason that you can pin it on. And there almost certainly wasn't anything you could have done about it.

2, if they even vaguely suspect a blood clotting problem (especially in cases where the baby was growing slowly throughout the pg) they will often suggest a 1 a day low dose aspirin. Its not harmful to the baby, so they don't mind doing it on a "see what happens" basis (you need to discuss it with your gp though)

3, there is evidence that early scanning in pregnancy can positively affect the outcome. They offered us a scan every week for the first 12 weeks. Its another one of those things where they don't know why it works but it does. I personally think its because it helps you stay positive, and that can have a powerful effect.

Although UCH were pretty okay considering, we eventually decided after m/c number 3 that we needed more support and also went for the Portland. Our consultant was Pat O'Brien although we also saw the two ladies on the same team a few times, they were all wonderful. I was terrified by then and really needed the extra support. I had started to believe that I might never manage to have a baby so in my mind the cost of it was really irrelevant (oh those heady pre credit crunch days.) Anyway to cut a long story short we now have 2 lovely DDs. So it did all work out for us.

But you never do entirely lose the sadness about the babies you lost. I remember really vividly things like my milk coming in, such a whack in the face that one. And having to explain the loss to people, and the stupid things they would say. All awful stuff. Luckily UCH had a good bereavement midwife who used to phone up, that really helped. Plus there was a community midwife who came round to check up after I was discharged. TBH I just cried at her, but it was nice to have someone give a toss.

I really feel for those of you who have been just left to get on with it, thinking back we got a lot of looking after. I can't imagine how much worse it must be without anyone even trying to find answers or hope for you. Please do hold on in there, and demand help, for next time if not for this!

Hope4Future Mon 11-Aug-08 18:22:14

Thanks for the messages Taliac, SweetPea and Slickbird. Its really good to hear that things have worked out in the end for some too.

I have been really lucky in the support I have had from friends and family- it really makes you appreciate people when something like this happens. Obviously there have been some people who have shown their true colours, but that is good too in a way!

I am getting through this by being proactive, focusing on the future. If I stop for a minute my mind drifts to what could have been, I actually looked on the Jan 09 thread to see what I would be feeling if I was still pg sad. I've still got a lot of hope for the future though, and part of that is arming myself with an action plan.

I called the hospital and they said I should hear about appointment soon, so I'll just sit on that one. I really want to start trying again though, I so enjoyed being pg, even though it was just for a short time, it made me feel so complete. Just want to get close to DH again too. Does anyone know/ have any advice from consultants about when is sensible can start trying again? from what I can gather its best to wait at least one cycle. I don't want to go on the pill or anything though, I think that takes a while to get out of your system. I kind of think I'll wait to see if the PM throws up anything, if so take it from there but if not BD as normal and assume body will decide when ready smile

mum2jai Mon 11-Aug-08 19:38:11

Found last night and today hard and I don't exactly know why. I think it may have been receiving details of a course I'm going on in a month which I had been hesitating to book because I thought I was going to be 8 months pregnant. It's the little things that trip you up sometimes....

I had sickness with Jai when I was 20 weeks but he must already have been dead by then. And I also had a resurgence of sickness with each of my others at similar times so I don't know if there's anything significant about that.

All through a couple of my pregnancies I had diarrhoea on and off - and they thought that was a sensitivity to the prostaglandins I was producing. I didn't have that this time though. Also my hair normally stops falling out when I get pregnant but that didn't happen this time. Who knows whether any of it is significant. I just end up trawling through my pregancy with Jai trying to spot differences/things of significance.

On aspirin, I was told to take a low dose as we had had one blood test BC that suggested I had APLA Syndrome (a blood clotting problem) but in fact they never bothered re-testing me because they say a low dose of aspirin is good in pregnancy because of the increased risk of a thrombosis. We were encouraged by our IVF doctor to take it before starting IVF I think because of anecdotal evidence that it helps with implantation etc. The very next cycle I fell pregnant naturally with my DS1 (though was also doing acupuncture and Traditional Chinese Medicine for endometriosis - so who knows what worked!).

Hoping that the rest of you are feeling stronger today than I am.

pwcbird Mon 11-Aug-08 20:01:18

mum2jai I know how awful it feels. You suddenly get a day when you just can't stop thinking about everything and you can't stop the tears flowing. I understand also about timing. DH's family come from Manchester (we live in London) and we had been making plans as to when we would visit and I said I didn't want to go up after the end of September. All these plans you make and suddenly they don't matter. Our baby was due November 30th and I was starting to think about buying Christmas stuff early as I knew I wouldn't be able to do it at that time. Our whole year was planned around this baby and now it's been taken away. It's your hopes, and excitement and happy plans that get stolen in an instant.

I feel ok/good today but I do feel it so hard that one moment I was pregnant and just over 24 hours after the scan I was home and not pregnant and that was it. And the lack of after care is harsh. Nothing basically.

Sorry if this is moany - I really wanted to give (((((hugs))))) to mum2jai, and all of you, but must be going through an angry day at the unfairness of it all

SweetPea99 Tue 12-Aug-08 11:01:00

Mum2Jai,
I'm sorry you had a bad day yesterday, and I hope you are feeling less down today. 'They' do say that you should be prepared for good days and bad, but I am still finding it difficult to cope with, especially the feeling now that I should be getting over it, and not crying any more. My constant refrain to DH is 'But I don't want to be msierable any more.' He is extremely understanding, and says that you just have to accept that there will still be times when you don't feel able to be positive and you have to try not to be so hard on yourself.

I have been thinking that the whole event of losing a baby is so intensified by the hormones that it is very different from another kind of bereavement - it is almost as though you have even less control over your feelings iyswim.

I also have a feeling that until we have a successful pregnancy, the demons are not going to be completely laid to rest. Hope4Future, I feel like you, I want to be pregnant again (even though it was AWFUL!). Maybe it's because we don't have other DCs (I don't think that you do?).

Here's to the next good day, and having a place for all of us to vent on the next bad one.

pwcbird Tue 12-Aug-08 12:19:14

sweetpea99 I think in truth having other children does help but probably only because it forces you back to reality even if you're not yet ready for it.

Regardless of whether we have a child already or not we are all in the same boat and I don't think our feelings of sadness and grief are any less. However, for me personally, I do think that coming home and having ds here has helped me enormously, if only because it takes my mind off what has happened and I have to retain normality and smiley faces for his benefit. I don't want him to see me sad as he doesn't understand.It gives you a focus and a reason to be positive. It's exhausting though because sometimes I just want to sit down and stare out of the window and I can't.

However I think that although those of us who have children already and have therefore had a successful pregnancy, it doesn't take away the fear that things can, do and have gone wrong and so they can again. I really, really want to get pregnant again, but like you, I'm terrified about what may happen and I feel angry/upset that the happiness that you should feel when pregnant has now been taken. If I do get pregnant again it's going to be 9 months of worry and anxiety.

We have to all take heart in all the stories that 'everyone' tells you about 'so and so' who had successful pregnancies after mc's.

My moods seem to be in keeping with the weather right now - sunny and I'm ok, rainy and I feel rotten!
(((hugs to all)))

Hope4Future Tue 12-Aug-08 13:41:09

I don't have children, but i have 3 step children, which is good because they are lovely (although they didn't care about pg either way- think it way too early for the and it hadn't sunk in) but also reminds me why i want children of my own. I wasn't sure I wanted kids til I got to know the stepkids, and now I see the joy they bring I want it sooo much(ok, there is sooo much stress and it gets harder as they get older- oldest is 16! I am only 28 shock)

SweetPea99 Tue 12-Aug-08 13:45:25

Huh - completely agree about the weather pwcbird, and it seems to have done nothing but rain this summer!

I don't think my meaning was clear in my last post, I didn't intend to imply that those who already have DCs feel less grief - of course we all feel grief differently!

Back at work this week, right where I started, and my boss has already taken me aside to deliver a lecture about the importance of team morale. hmm

TinkerBellesMum Tue 12-Aug-08 13:57:04

Antiphospholipid Syndrome causes 10% of miscarriages and 20-24 weeks is the danger time with it. I would definitely ask to have a full screening done.

I was tested for everything (STDs, rare diseases etc) and the only positive I had was for Antiphospholipid (Hughes) Syndrome.

TinkerBellesMum Tue 12-Aug-08 14:14:13

I forgot to say, I lost my daughter at 20 weeks, she was born alive so they didn't test her, they tested me. I now have another little girl who was born at 21 weeks due to me going into labour early before. I'm also pregnant again. I take Heparin and Aspirin daily during pregnancy and Aspirin daily normally. With drugs our chances go from less than 18% to more than 80% - better than any first time mother!

BBBee, it's not really that new, they've known about APS for over 20 years. I personally think it should be part of the normal antenatal screening and done if someone miscarries before they are tested. 1 in 10 is a hell of a lot of miscarriages accounted for! Especially considering it affects 1 in 500 with no relatives (1 in 10 with relatives).

jellybeans the infection could be your body attacking the placenta as that's what's thought to cause the loss with this awful disease. Did you go into labour? I had 27 hours of labour (misdiagnosed as a UTI) so although they tested me last time, they said it couldn't be IC because I was in labour too long.

TinkerBellesMum Tue 12-Aug-08 14:37:57

SweetPea, it might also be worth getting a referral to a Rheumatologist or Immunologist (usually same clinic though).

mum2jai Aspirin is only enough if you haven't had a previous event and you have - the loss of your baby! It's also not something that can be left as a pregnancy condition, you need to be followed up with a Rheumy. I've found out a lot of things I didn't know because of it - I have Raynaud's and suffer from recurrent TIAs. You need to be monitored outside of pregnancy if they are saying you have Hughes.

mum2jai Wed 13-Aug-08 00:27:11

Thanks, TBM. I've never had a diagnosis of Hughes. I had slightly elevated APLA levels before DS1 - not enough to warrant heparin only aspirin - they explained that they needed to test a few weeks apart to confirm diagnosis but I was already pregnant with DS1 by that time and they get false readings in pregnancy. Also when they tested first I had a broken ankle which can also give a false reading apparently. Though all of this was over 6 years ago so I'm sure it's all moved on heaps.

Do you know if they can tell from the PM if you have Hughes? I understood that because it causes problems with the placenta, the signs are very obvious. Our PM report and with Jai's bloods and mine.

Thanks all for your kindness through some sad, sad days. The loss each of us has suffered is terrible, and my heart goes out to all of you. In some ways it's easier having other children, largely because we have had to keep ourselves together. But there have been some really difficult aspects - like the 2 irrational days I spent a week after Jai's death, refusing to sleep, convinced that if I did my 2 year old was going to die in his sleep (and I'm not known for being histrionic!). Or like dealing with their bereavement - including some very challenging behaviour when we were at our lowest point (eg my 5 year old who said it must have been my fault and I must have done something silly to kill the baby - something tells me he's always going to be my harshest critic! Or my 4 year old who spends the day painting prodigiously, mostly pictures of "the baby that is dead" said in her best mournful voice).

But the real pain is that you have lost the child you have loved all his short life. And that is the same however many you have had before, and, I suspect, however many more you go on to have. We have had sweet, lovely people say to us - and we have taken it in the kind spirit intended - that at least we have three others, which makes up for the loss. It's a blessing having the others. But the truth is, if I had told them I had lost my mother, they wouldn't tell me my loss is any the less because I still have my father. I miss Jai, the baby of our family, every minute of every day, and nothing makes that better.

snowwombat Wed 13-Aug-08 08:48:50

hugs to you all girls, I have been lurking on this thread for the last week and I am so sorry that all of us have lost our babies.
Our first child, oliver, was born on the 19th july at 20 weeks and 3 days after I had ruptured membranes a day earlier.

I went back to work after a week and I find this fills some of the gaps despite being surrounded by small children, babies and pregnant women (I work in a children's hospital).
Our beautiful social worker just called to tell me Oliver's clay prints of his hands and feet are ready. They offer this to all the neonatal deaths/stillbirths. All I want is my baby back, not his beautiful little prints. He had really big feet and hands, just like his Dad.

I managed to make it through the day without crying, but i can't stop now. I ran into a friend this morning that knew I was pregnant but not that Oliver had died, it was the first time I have had to tell someone and it was awful.
Sorry for posting such a miserable message, some moments are good and I am trying to find a positive every day, but others times, like now, I just need to cry.

SweetPea99 Wed 13-Aug-08 10:53:59

SnowWombat - so so sorry for you sad. You are incredibly brave to go back to work so soon, and to be surrounded by pregnancy. The clay prints sound lovely. Don't feel bad for being miserable - we all understand how you feel.

pwcbird Wed 13-Aug-08 11:25:59

snowwombat so sorry too. It's just awful isn't it. You mustn't stop the tears if they want to come (but know it's hard if you're at work). The first two times I went out to the supermarket afterwards I bumped into 3 people I knew and had to tell them. It's incredibly hard but each time it was easier (1st time I cried and couldn't speak virtually, 2nd time I managed with just my eyes filling and 3rd time got through it). It's that terrible thing when they rush to you all smiles and a 'how's the pregnant lady?' type greeting. I even had one come up and touch my tummy with a 'how are you?'. Awful. We are here if you want to chat - that's what Mumsnet is so good for.

mum2jai I am in total agreement with what you say about having children and am pleased you mentioned the irrational thoughts about them dying. I've had that about ds and told no-one about it because I know it's silly but sometimes I can't stop worrying. My brother died in 1992 and I remember from then being terrified about losing another member of my family. I think it's a normal process with bereavement but it's terribly hard

TinkerBellesMum Wed 13-Aug-08 12:38:23

Hughes is the name for APLA/ APLS/ APS/ Antiphospholipid Syndrome. There is a move to get everyone using that name as it standardises what people are calling it and to keep people referring to Prof Hughes. The problem is because it's relatively new and he's still alive people don't like using his name (what's the saying about a prophet not being accepted in his own town?)

Oh gosh, you've just repeated the one myth that gives me chills! This is why you need an expert in this disease. PLEASE don't EVER let anyone tell you that your levels are too low! You HAVE HAD an event! This is the ONLY disease that levels are irrelevant. I know of people dying from having negative levels - it's called seronegative. It means nothing, history is FAR FAR more important! I am classed as low/borderline but I have TIAs (mini-strokes) on a regular basis, I have Raynaud's and I have lost a Mid-T baby. I've not got it bad, far from it, but I am more than just borderline low. The other thing is with levels is they vary through the day, time of the month for women, diet, exercise, stress... A test is a snapshot of one particular moment, it doesn't give you an overall picture.

I'm not shouting at you, just emphasising how important that myth is. You MUST make sure you are given Heparin with the Aspirin when you're pregnant. Even though you have had children since, the natural success rate is less than 18%, I'm not sure what Aspirin changes the risk to, but someone has to have babies for it to be 18%.

I just read false readings in pregnancy - my head is hurting and I have the pattern of my keys on it! The disease gets WORSE in pregnancy! More reason TO take Heparin.

They won't be able to tell from the PM that you have Hughes, there may be signs if they are doing a PM on the placenta but TBH no one truly knows WHY we lose our babies.

I can't remember if you said you were a Londoner, if you are please tell your GP to refer you to Prof Hughes at St T's, if you're not let me know your area and I'll ask my support group (or you can join it search for APLSUK Yahoo Group) who the best Doctor would be for referral.

mum2jai Wed 13-Aug-08 16:16:11

TBM - I had the blood test before having kids so at that stage there was no event or anything else to go on. I'm confident that the advice we got was appropriate. We had 3 children before losing Jai, so again there was nothing to change the advice at that stage. We lost Jai only a couple of months ago - so still v.v.raw - and we are only at the start of the process to find out why. Yeah they've done a PM on the placenta and it's all come back normal and our bloods were normal too (so far).

Thanks so much though for the info - it's very useful to know. I'll discuss it with my consultant and my parents who are also consultants in London. Do you happen to know from your researches if there is any evidence of/suspicion of a link between endometriosis and Hughes?

Spea - I meant to say you should slap your boss (metaphorically speaking of course!). Mine asked whether I was on antidepressants and questioned whether my kids were really feeling bereaved...ho hum... do you feel some 360 degree feedback coming on...?

pwcbird - so sorry you lost your brother too and that you've been fretting about losing your DS. They do say it's normal (and it's logical too when you think about it) but it is horrible.

S-wombat - you are doing well esp going back to work so soon surrounded by babies and pregnancy etc. Thinking of you and the rest of us sad ladies who have lost our little ones.

TinkerBellesMum Wed 13-Aug-08 16:30:23

Ah, I understand, I thought you'd had a previous loss too and that's why you were already on it. Yes it was enough in previous pregnancies then, but it won't be in future.

It's linked to everything! Because it attacks cells it brings on lots of other things. It's unique in that because other autoimmune diseases attack something specific - joints, extremities, veins, arteries, an organ etc - so the problem is localised. This disease often makes people feel like they're going mad before a diagnosis because of all the different things that are wrong with them.

I don't really know much in the grand scheme of this disease, but I highly recommend APLSUK for information. If I'm going to the hospital about something I ask them first because some of them know more than most doctors.

What are your parents consultants in?

BTW it took three months of tests before I got a positive

pickle78 Wed 13-Aug-08 16:55:34

Ladies,

I am truly sorry for all your losses and know only too well how you feel.

I found out on 27 July that our baby had died, I was 22+2. I took the tablets to prepare my body for labour on 28th & was due to return on 30th to be induced, but I think my body already knew the pregnancy had gone wrong & that tablets sped the process. I gave birth to our first child, a son we named Ellis during the early hours of 30 July.

I cannot fault the hospital staff, they have been fantastic through out & I'm still in contact with my midwife. We were offered a post mortem and was told that it would take between 4-6 weeks. We chose to have one as we both felt we needed to know what had caused this and if we needed to be prepared for future pregnancies.

I'm surprised by this thread to read that this is not offered by all authorities. As well as the post mortem, various tests have also been done on me & we have an appt with our consultant (booked before we left the hospital) for 2 October to discuss the results. We've been told that for any future pregnancies, we'll be under shared care with both regular midwife & consultant appts/scans. I think even if the PM/tests show no reason they still do this as they know how anxious parents will be feeling.

My blood pressure was high when we found out we had lost Ellis but they are not sure if this was a symptom of losing Ellis or a cause. Bloods have been taken to check. We also found out at our 20 week scan he was measuring small, well under the 5th centile & had been booked in for a growth scan 4 weeks later, again hopefully the PM will reveal if this was a symptom of the problem

I keep reading about late miscarriage (I hate saying miscarriage as it seems to belittle what we have all been through), it says the chances are 1% after 20 weeks - but there seems to be so many of us in this sad situation.

I know how hard it is to leave the house, I went out last week for the first time & of all the people I bump into (in a empty shop) but the midwife who delivered Ellis. She was lovely & in a strange way it was comforting as I didn't have to pretend. I've been signed until end of August initially & luckily my employer has been fantastic.

I brought a book off Amazon, called "when a baby dies", it has helped me understand what I'm feeling is completely normal & all part of the grieving process. I would recommend reading it.

Sorry, I've gatecrashed & waffled! Once again, I'm so sorry to hear all your stories.

I hope there are more positive times ahead for us all.

x

jellybeans Wed 13-Aug-08 17:11:28

(((hugs))) to everyone, so sorry for your losses TinkerBellesMum I was fully dilated with no contractions on arrival at the hospital. Only signs were a watery discharge for a couple of weeks and I felt like I needed the bathroom at 20 wks but realised it was something 'coming out'. That was my membranes bulging. I hadn't felt movement for 24 hrs but she was alive until just before birth When I was about to have her my cervix began closing again so I had to go on a drip as at that point had high fever. I had her a few hours later and was very drugged up.

I am now pg again and my LA (Hughes) test was 'negative' at the beginning of this pg but it was not normal (too low) and they said it can play up in pg. I was also on aspirin. I started Heparin at 7 weeks. At 20 wks a scan showed my cervix was opening so I had a stitch. So I still am not sure whether Hughes or IC or both caused my late loss. I also had 2 early losses and lost DD at 23wks to a chromosome disorder. What is strange is that I got a high downs result with the DD I lost at 20 wks which I read can be due to Hughes syndrome/failing placenta. This pg, it was low risk.

TinkerBellesMum Wed 13-Aug-08 17:43:50

That is a good description of IC. For some reason IC and Hughes seem to come together and mask each other, sadly you get women who are on Heparin and Aspirin for the first time only to have an IC and lose it anyway. Sounds like they're really covering you treating you for both.

Have you seen a Rheumy or just your Obs?

TinkerBellesMum Wed 13-Aug-08 17:47:19

I just reread that, I didn't know about the Downs test, Ill put that to APLSUK. It's a good reason to turn it down.

Anyway, are you feeling like a pin cushion yet? My legs are bruised and I hate going to the hospital cause I know there's going to be loads of blood taken! That reminds me, do you faint a lot with bloods?

Hope4Future Wed 13-Aug-08 18:00:51

Hi

Just reading about the APLSUK group. I was wondering if anyone knows of a link between APLS and the antigen marker HLA B27. Not being a scientist, I'm not sure exactly what the deal with this is, but it is indicated in several auto immune diseases, one of which is iritis (eye problem) which I am prone to due to having this marker. I was wondering if there is any link between the two? I haven't heard from the hospital since losing my baby at 16 weeks. Have been told I should hear about appointment soon, but I haven't been asked for bloods or anything- do they take your partners bloods too?

If worst comes to worst and I am denied further tests, does anyone know if I can just contact a clinic and get tested privately? I really want to rule out everything possible before trying again...just to give it the best chance

TinkerBellesMum Wed 13-Aug-08 18:04:43

As I said before, it's linked with everything, so it could well be. Are you under an immunologist or rheumatologist? If you're not given a full LAC screen then get it done by them or get your GP to refer you to one. I'm sure if you come to the APLSUK group they will have some ideas.

My partner wasn't tested, but I guess that may have come into it if they hadn't found something wrong with me.

Hope4Future Wed 13-Aug-08 18:16:44

Thanks for your help. I see an opthlmologist just because its an eye condition, but people with HLA B27 can also get lots of nasty things like spondylitis, reiters syndrome, arthritis, the list goes on. That said, I think about 8% of the population have HLA B27 in their genetic makeup, so may not have anything to do with it.

Sorry for my ignorance TinkerBellesMum, but whats an LAC screen?!

TinkerBellesMum Wed 13-Aug-08 18:49:44

Lupus Anti-Coagulant, it's the name for the full range of tests.

Rheumatology covers autoimmune diseases, even when it's nothing to do with the joints, which is why I asked if you are under one. It's worth asking your GP if you can see one if you are worried about it being a possibility.

sadminster Wed 13-Aug-08 18:50:45

"I got a high downs result with the DD I lost at 20 wks which I read can be due to Hughes syndrome/failing placenta"

I had this too - 1 in 16 chance, I was 24 - I declined testing in subsequent pregnancies.

Aspirin alone didn't work for me - miscarriage dr (Ms Evidence-Based-Medicine) put me on 150mg of aspirin but refused to prrescribe clexane (that was after mc number 5 (twins)). I had a complete strop & the high risk obstetrician prescribed the clexane (ds was fine - born at 38 weeks). This time I didn't have access to the same dr, only had aspirin & a bad outcome. Some women only test positive in pregnancy & tbh with a history like mine lots of drs will treat without evidence of antibodies.

I assume LAC is lupus anticoagulant?

I have my consultant appointment on September the 9th, GP this Friday & Silver Star at the end of September. I'm still not sleeping & am mentally, physically & emotionally exhausted. Feeling quite depressed.

Hope4Future Wed 13-Aug-08 19:02:13

sadminster

what you have been through is truly awful, but please try and look on the positive side, in that you are doing everything you can and that's the most anyone can do. You sound like you are going to be in the best possible care with Silver Star, so please try and stay positive, easier said than done I know.

SweetPea99 Wed 13-Aug-08 20:57:27

Sadminster, [hug].
Agree with Hope - you have every right to be exhausted and depressed, you have been through so much. It sounds as though if you are properly treated you have a good chance of a positive outcome in the future? I know that doesn't help with the babies you have lost, and your outlook at the moment. You must be feeling very bitter.

I am so fed up of hearing 'every pregnancy is different' and 'every woman is different'. Can that really be true? Or is it just that there is not enough funding to actually do some research?

Hope - I posted this same question on the MC Avengers thread in 'conception', and a lady called Kate gave lots of information about the tests she had, which included the LAC ones I think. It might be worth taking a look?

Hugs to all.

SweetPea99 Wed 13-Aug-08 21:06:55

I have copied the messages from the other thread, the following is from Kate. I'm not suggesting it's a good idea or bad, just adding the information to the mix!:

Sweetpea re private tests, I've just been sorting out some papers and I found the letter from St Mary's Paddington about which tests they offer and the charges, thought you might be interested (and at the charges!) Just don't ask me what they all mean! Here goes:

First Consultation: £200
Follow-up consultation £150
Cycle monitoring £480 per cycle
Chromosomes (male & female)£171 per person
Day 2 LH/FSH £28
Testosterone £35
Rubella screen £45
Full Blood Count £28
Blood Group £28
Fasting insulin/glucose
Pelvic ultrasound scan £172
Antiphospholipid Antibody tests x2 £100
Prothrombin Gene Mutation £100
TEG (thromboelastogram)£50
Factor V Leiden £100
Activated Protein-C Resistance £60

So all in all an easy way to spend a LOT of money without even trying! The FBC, Rubella, Blood Grouping, fasting insulin/glucose I had done by my GP - for free !

sadminster Wed 13-Aug-08 21:38:18

Argh ... one second trimester loss means that you should be referred to a miscarriage clinic. We had our first second trimester loss in mid-Novemeber '05 & were seen in clinic at the beginning of January '06 ... as Sweatpea says it is so easy to spend a fortune.

The mc clinic did these tests for us:
Chromosomes
Day 2 LH/FSH
Testosterone
Rubella screen
Full Blood Count
Blood Group
Fasting insulin/glucose
Antiphospholipid Antibody tests
Prothrombin Gene Mutation
Factor V Leiden
Activated Protein-C Resistance

I had all the chromosome, clotting, glucose & infection screen repeated on delivery suite just after Toby was born.

They were going to do the cycle monitoring & pelvic ultrasound scan but I got pg with ds before we got a chance. Also did the full thyroid screen & antibodies.

In my experience it was getting treatment that was hard not so much the investigations. I paid for a HSG privately (£300 shock ) and NK/cytokine testing (£800 initially then £300 for the repeat shock shock ) because the NHS wouldn't offer them .. I've never had the thromboelastin test. I had dexamethasone & IVIg (£1300 a go) for anti-progesterone antibodies & slightly raised NK activity in my twin/IVF pregnancy (that miscarried) but with my ds (next pregnancy) I didn't have IVIg or dexamthesaone but self prescribed (shoot me now) prednisolone for the first 8 weeks.

Get as much as you possibly can do on the NHS - when you start down the private route (it is so much nicer because you aren't constantly fighting people) the costs pile up o fast ... we paid well over £17,000 for two pregnancies (one IVF) & our mc investigations/treatment before we had a live bay. I don't regret it for a millisecond but we could have saved money if wwe'd been pushier with the NHS.

SweetPea99 Wed 13-Aug-08 21:53:58

Thanks Sadminster,
I have an appointment with a gynacology consultant in September, so I will take that list (it was Kate that had those other tests not me) Our health authority (Hampshire) doesn't seem to have a miscarriage clinic. I don't suppose anyone knows otherwise?

Gosh Sadminster, £17,000. It's not fair is it?

TinkerBellesMum Wed 13-Aug-08 23:21:24

Yeah, the whole disease can be diagnosed on evidence alone, as I said before the numbers don't mean much except that they may back up what the evidence shows. Unfortunately it's so rare for a disease to work that way that most doctors are too caught up in numbers.

BTW, the L is Lupus, but LAC has nothing to do with Lupus, just like anticardiolipins (part of the LAC screen) have nothing to do with the heart. Is it any wonder no one knows what's what?

I was told that if my daughter hadn't survived birth they wouldn't have tested me for anything and she would be classed as a miscarriage. Her strength in surviving birth meant that it wasn't something to do with her that she was born. They asked if I wanted a PM but I asked if it would do any good as she was born alive. They said that was their thoughts but they couldn't influence me. I told them to do a PM on me! Fortunately that's exactly what they did and they did get their answers.

pwcbird Thu 14-Aug-08 09:41:30

Hi everyone,

This is really interesting. However, I don't know if anyone else is like this, I came home from the hospital just over 2 (29 July) weeks ago and had nothing. The only thing I got was a leaflet 'when your baby dies' from the nurse as we were exiting the ward. No tests (apart from the pm which we requested), no referral, no what happens next time, no call from a midwife or anything from my gp, no miscarriage clinic. Just left to get on with it (I'm Croydon, south London). I'm in a bit of a flux really. I think the only thing I can do is go and see my gp and ask. I was 22 weeks but the baby died at 17 so they think from sizing.

I'm full of so many emotions - anger that I've just been left and the only information I get is from what I look up on the internet and still feeling terribly upset. Had two horrible dreams last night about losing DS which I know is just a normal grief/bereavement thing (as mentioned yesterday) but it's so emotional.

Another thing (sorry to moan ) has anyone else had this - I had about a week when everyone left me alone and then last Saturday I had my sister in law with hubby and baby, I've today got a girlfriend coming to stay for 2 nights and next weekend (bank holiday) my mother in law is coming (though this was a long standing arrangement). It's all very lovely having people who care and want to be around but it's exausting and I feel I haven't got a second to breathe and just sit (what with having a toddler as well) and maybe have a tear if I want.

Anyway, rant/moan over. Sorry ladies. x

Hope4Future Thu 14-Aug-08 13:47:25

Hi pwcbird

I have been exactly the same. I haven't heard a thing since leaving hospital 3 weeks ago. I did get a card with a number on it, which i have called for advice a few times, but apart from that, nothing. I am just waiting for the PM date to come through, but the whole investigations thing seems to take so long, and I just don't know where to start.

I know what you mean about visitors. I think people think if you are kept busy then you will get over it easier and with less emotional upset. But I think that crying etc is part of the process, which helps you to work through the grief. I think it is true you don't get over it, but you learn to live with it. I don't think I want to 'get over it' in the conventional way. Being pregnant was a wonderful experience, I'll always remember that, and feelings are gradually moving from sadness to fondness, because for a short time I was a mummy to beautiful little boy.

I think friends and family have kept me sane through this, and keeping busy is a good thing- I went back to work this week and that has helped too. I still spend a while before bed thinking things through, but it isn't getting me anywhere really, just going over and over the same stuff. I've come up with a million theories, but it could just be 'one of those things' in the end...so i am going to focus on the future smile

This forum has been a great help so thanks everyone.

snowwombat Fri 15-Aug-08 00:27:15

hi girls,
it is a sunny morning here in sydney and I am feeling quite good- no work today and going away with DP and friends for the weekend.I am hoping distraction therapy will help us through Saturday when it will be 4 weeks since Oliver died. I am working up the strength to ring the crematorium and find out when we can collect his ashes.

Thank you so so much for your support, it is so important to have this forum where you have people who understand, this has been invaluable for me.

pwcbird and hope4future so frustrated for you that support and follow up has been non existant. A trip to the GP would probably be quite useful. Our only medical follow up is our date for PM result and my bloods, but we have a social worker who provides support and liaises with the clinic- invaluable.

sadminster how are you? I hope you are getting the support and hugs you need. Really really pleased you have an appt at Silver Star.

sweetpea there must be a miscarriage clinic either in hants or a tertiary centre they refer to- GP/gynae will know (and if she/he doesn't he can find out!)

tinkerbellesmum you are a font of knowledge!I will be making sure I check I have been tested for APLS

jellybeans did i read correctly that you ar pg again- how lovely!

welcome pickle78, sorry so that you have lost Ellis.Come join in any time- they are a great bunch on here.Late miscarriage is an awful term, not sure the australian one is much better- neonatal death or stillbirth for any babies born after 20 weeks.

mum2jai how are you doing? Delivered that feedback to your useless angry boss?

To everyone that has contributed to the thread, thank you so much for your support.To be in this situation is awful, and there are so many ups and downs. Just glad to find myself smiling this morning, for a little while at least I hope.

mum2jai Fri 15-Aug-08 00:53:12

Thanks swombat. Definitely doing better - had a bit of time off work doing fun things including the theatre tonight and dinner with DH.

Still p*** off on behalf of H4F and pwcb for useless aftercare. Definitely time to kick up a stink.

And v.happy for jbeans for expecting again.

Welcome p78 - sorry we meet in such sad circs.

But you know what, the thing that has struck me most on this thread is how incredibly strong and just b*** amazing we are for living through these terrible losses, and functioning so well.

So well done us. smile We're fab!

TinkerBellesMum Sat 16-Aug-08 20:22:28

Thanks snowwombat, believe it or not though what I know is a very tiny amount of the disease. It is a good disease to make sure you are tested for because when you have a late loss your risk is increased dramatically. Also, look to your family, do you have much in the way of autoimmune diseases (including eczema, asthma and arthritis) or just general ill health? The disease can suddenly appear in your family tree and an indicator is a lot of autoimmunity or sickness in your family. There is a link between Hughes and cancer (I don't know too much about it) that seems to suggest that Hughes is the body going over board trying to stop cancer, so (my thoughts) maybe a lot of cancer in a line can cause it?

Hope4Future Sat 16-Aug-08 21:28:23

Tinkerbelles mum,

Sorry to ask this question, but is it more likely that APLS involved if the baby has died in the womb? My baby was still alive on the scan, it was my waters that broke which meant I lost him.

TinkerBellesMum Sat 16-Aug-08 22:37:00

It can happen either way. The disease is thought to attack the placenta which means the baby can die before it's born or the placenta gets to a point where it decides to end the pregnancy as it can't continue to sustain the baby. Like you my baby only died because she was born, my waters didn't break so she was protected from passage but she died shortly after birth as she wasn't strong enough.

Hope4Future Sat 16-Aug-08 22:47:30

Thanks TinkerBellesMum, I know it is a difficult question to answer, it is just something I have been thinking about...I am at the stage where I have no answers, so I am making up a million theories, then trying to discount each one. Silly I know but I can't help it.

orangehead Sat 16-Aug-08 22:55:55

First of all Im so sorry sweetpea.
Im not too sure about late mcs, but I lost my first baby at 12 weeks and they did tests on the baby which showed my baby was normal. I am very surprised they have not done further tests at a this later stage. Sorry I have no real advice, sending you hugs

TinkerBellesMum Sat 16-Aug-08 23:08:10

It's no problem, I like to find out what I can and use it to help people who wouldn't know about it otherwise.

To be honest it sounds like (as with me) the problem came from you (not that you were to blame) rather than the baby, so I would hope that they are testing you for everything they can.

Hope4Future Sun 17-Aug-08 13:22:47

That is my assumption too, that the problem is with me or it was an infection. I am waiting for PM results, but have not had any tests on me. I went to GP who said I had to wait to see what PM said, and IF anything else needed doing then they would look at it then. To be honest, I would like all the tests regardless of PM results...I have read that quite often it is a combination of things, so if they found one prob with PM then that doesn't neccessarily mean there isn't another, IYKWIM. I'm scared they'll just say, 'it looks like it was a one off, no further action, go away'

It's so frustrating!

godwin Sun 17-Aug-08 19:53:20

I just wanted to say how sorry i am that so many ladies have had such a sad time lately. I found this site by chance on google and feel so relieved, i don't want to sound insensitive but i have wanted many questions answered and feel that this site has helped me so much already. To briefly fill you in on my two years of hurt,sadness and emotional turmoil,We have 2 healthy sons but we had our first mc at 8 wks in Jul 06, tests came back saying it was just one of those early umexplained mc, but was a triplet pregnancy. Feb 07 we went for 20 wk scan to be told our baby girl had died, went through a traumatic birth had pm but no tests were offered on me or dh!? Pm revealed i had a huge haematoma which had caused placenta to come away. Jan this year, we went for 12 wk scan again we were told no heartbeat, had d and c and before we left hospital, we insisted on an appointment with consultant and all bloods to be taken. Appointment seemed to go as well as can be expected, nothing came of the blood tests everything was as it should be. Dh was not tested for anything!? It was suggested if we wanted to ttc again we must contact consultant asap, which we did when i found out i was pg again in may this year. I was on progesterone until wk 12, aspirin til 36 wks, sadly we only got to 16 wks scan(scanned every 2 wks) found out yet again baby had died. Gave birth fri 8 aug, feel devastated but having read others threads on here i know i am not alone. I have realised from here that i have not been tested for everything and now feel that i can go to my next appointment fully armed. Obviously we are having another pm and tests on placenta, one dr at hospital thinks it is def a proplem with my placenta and clotting but consultant won't commit. Anyway, sorry this is so long thanks for all the information on here and good luck to you all for future happiness.

SweetPea99 Sun 17-Aug-08 20:51:23

Hello Godwin,
Glad you found us, but sad to read your story sad. I hope that you get some answers and some help to carry you through. I hope this doesn't sound insensitive, but it is reading stories like yours that is making me determined to push for tests. If anything can be done (and I know that sometimes it can't) then it should be! Good luck with your appointments. xxx

Hope4Future Sun 17-Aug-08 21:10:57

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

TinkerBellesMum Sun 17-Aug-08 21:21:47

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.

mum2jai Mon 18-Aug-08 00:44:02

Godwin - so sorry to see another new face here and so sorry for your loss. sad 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.

TinkerBellesMum Mon 18-Aug-08 10:15:51

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.

TinkerBellesMum Tue 19-Aug-08 00:48:10

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.

TinkerBellesMum Tue 19-Aug-08 00:50:33

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.

TinkerBellesMum Tue 19-Aug-08 00:57:07

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.

2. 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.

2. 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.

SweetPea99 Tue 19-Aug-08 09:02:08

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 sad. 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 envy. 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.

godwin Tue 19-Aug-08 10:27:43

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.

sue10 Tue 19-Aug-08 11:52:23

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.

sadminster Tue 19-Aug-08 12:55:00

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

TinkerBellesMum Tue 19-Aug-08 14:24:36

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.

charlie91 Tue 19-Aug-08 22:06:42

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

Hope4Future Tue 19-Aug-08 23:37:52

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!

charlie91 Wed 20-Aug-08 10:48:47

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

goingfor3 Wed 20-Aug-08 10:53:27

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.

TinkerBellesMum Wed 20-Aug-08 18:05:55

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?

pickle78 Wed 20-Aug-08 19:31:55

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

TinkerBellesMum Wed 20-Aug-08 19:56:20

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!

pickle78 Wed 20-Aug-08 20:11:48

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

TinkerBellesMum Wed 20-Aug-08 20:31:00

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!

pickle78 Thu 21-Aug-08 23:12:36

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

TinkerBellesMum Fri 22-Aug-08 00:09:05

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.

Fifty Fri 29-Aug-08 16:08:12

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

pickle78 Tue 02-Sep-08 12:22:46

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.

SweetPea99 Tue 02-Sep-08 16:48:39

Fifty, I think that you can ask to have swabs to test for infection once you are pregnant - I'm not sure how useful this is because I suppose you could be infection free one day and not the next, and you can't test every day, but I could be wrong (would be interested if anyone knows better?) If there is a positive side to your situation,it is that at least you know what caused the problem, and the chances of it happening again are surely extremely low? I appreciate that that doesn't help ease the neurotic tendencies though. I am terrified at the thought of being pregant again with no control sad.

Pickle - really hope you will get some results soon.

I have finally had some blood tests taken (after turning up as a nervous wreck to see my back pain specialist). I have so far seen my GP twice and a consultant gynae, none of whom offered even basic blood tests angry.I have also booked another appointment with a different obstetrician, and I hope this one will know what he's talking about. if any of them had lived through what we had been through, they might be a little more ready to try to find some answers instead of saying 'it's just one of those things!'

Hope4Future Wed 17-Sep-08 21:28:05

Hi...an update from me

After the appointment with the Consultant, I just wanted to log the suspected cause of my loss on this site, in case someone else goes through the same thing and is trawling the site for answers just like I did.

The PM results showed chorioamnionitis, and that poor baby was fighting it. They found no organism but the Consultant has said that they normally assume Strep B.

Because of the severe infection, baby would have been very poorly even if my waters had not broken as they did. I suppose it is a blessing that he was saved any more suffering.

snowwombat Thu 18-Sep-08 10:20:27

hope4future good to hear from you. How are you feeling after your Consultants appt?
Glad you have some answers from the PM. Have they offered any practical ideas for a future pregnancy (when and if you want?)

Thinking of you all and hoping everyone is doing ok. Guessing most of us have probably just had or about to have our follow ups.

We have also got our PM results for Oliver- he was perfect. My bloods are generally ok - they looked for all the antiphosolipids etc (thanks for all the great info on Hughes syndrome) and they were fine but my Protein S levels are lowish. We are now going to see the Obstetric Physician to discuss the possible use of clexane. Not sure if my levels are low enough to warrant clexane but v keen to find out more.

Hope4Future Fri 19-Sep-08 09:42:33

Hi Snow wombat (love the name!)

Thanks for the message. I felt down for a few days after the appointment, just because it all sounds so trivial. They said the bleeding probably made way for bacteria to get in, but then lots of people have bleeding and all is fine. So was I just unlucky?!?

The consultant said that they could give me antibiotics once a month if I got pg again to dampen things down, but then yesterday this whole report comes out saying that there is an increased risk of cerebral palsy by doing that. Hobsons choice!

SweetPea99 Wed 24-Sep-08 17:34:54

Hello all,
Hope you are all feeling OK. I just wanted to post because today is my due date and no-one knows except me and my DH, and he has gone off on a business trip (not intentional I hasten to add and he feels bad about it, but I said I was fine).

So I'm keeping busy, putting a brave face on it, organising to go out with friends for lunch and after work... but I feel SAD. It's only natural I suppose.

I really expected that I would be pregnant again by now, but we haven't been trying that hard and I feel ambivalent about it. I want a baby, but the pregnancy was horrible, constant nausea for 4 out of the 5 months, vomiting, diahorrea, scaly skin, even dandruff! and then the terrible shock of the ending, and still no explanation, so no way of knowing if it might just happen again.

I've lost the stone that I put on, struggled to get the ruins of my career back on track (handing in my notice on Friday - thanks for all the support from my bosses!) and the thought of climbing that mountain again is exhausting.

And I'm still crying... quite alot really.
I suppose it just helps to know that I'm not alone.

sadminster Wed 24-Sep-08 19:12:11

(((SweetPea99))) due dates are hard, so hard.

You sound just like me, you're not alone.

We need to do Toby's memorial plaque at the cemetray I can't do it though, I'm not ready to let go yet.

I'm pinning all my hopes on next year being better.

sadminster Wed 24-Sep-08 19:15:27

hope4future how do you feel about the PM results?

We didn't get any answers - everything was absolutely normal, I'm immune to all the nasty infections, no sign of infection, no clots, no abnormalities, all my blood tests were normal - it feels vry strange. But I don't think I would've felt better if there was an answer IYKWIM.

SweetPea99 Thu 25-Sep-08 11:08:17

Sadminster,
Thank you. I suppose we have to remember that the destination is worth the journey.

I keep telling myself that you just have to let the feelings happen, whatever they are.
If you're not ready to put Toby's plaque up, then you're not ready. You don't need to push it. You will be ready one day, when you're feeling stronger.

I'm feeling up and down, wobbly and unsafe, thinking too much about everything all the time, trying to keep so busy that occassionally one of the balls I'm juggling crashes down and I feel like everything I do goes wrong. I need to STOP putting so much pressure on myself, but it's just the world we live in! I'm hoping this due date is the last barrier, and now it's over I can work on acceptance with a little more energy.

Hope4future - glad you got an answer. Why isn't there any warning that you might just get an infection that could kill your baby without you even realising? None of the books mention it at all!

Here's to a better next year for all of us. xxx

pickle78 Thu 25-Sep-08 13:48:50

Hi Ladies,

Sadminster - as sweetpea says, take small steps in your own time. I started back at work last week & am gradually building my days up until I'm back full time. Its so hard to know what to do for the best, getting 'back to normal' is almost like accepting that everything is over. I felt so bad when I took the cards down but I knew I had to do it. My biggest hurdle will be seeing my friend, who is due a week after I was - I know I'm not ready for that yet.

Sweetpea, I echo what you are feeling. I think too much... Now we're ttc, I'm already thinking about wanting to be pg before edd on 29 Nov,how I'll feel when I get a BFP, during pg etc.

I hope last night was gentle on you.

Hope, have they offered you any extra appts/monitoring for future pgs on top of the antibiotics?

Its a week today until our appointment with the consultant. I'm not sure what is the best outcome, a reason or no reason iykwim.

Agree, next year will be our year xx

pickle78 Thu 02-Oct-08 18:04:34

Hello,

An update from me. The consultant has put the reason we lost Ellis down to intrauterine growth restriction caused by poorly functioning placenta, it hadn't embedded properly. Also mentioned that my slightly high blood pressure can be linked to IUGR, so can high triple test results.

He said all my tests came back normal including my bloods, he mentioned the APS/Lupus tests, they all came back negative.

Ellis was physically perfect apart from his size, no problems with his chromosones. He showed signs of an infection, but no infection could be found.

For future pgs, regular scans starting at 10 weeks, then every 4 weeks from 20 wks. Doppler scan at 22 weeks. I need to take aspirin daily as soon as I find out I'm pg again as this helps reduce the chance of IUGR happening again. We will be having a nuchal scan at 12 weeks instead of the triple test as this gives a better result (although still some margin of error).

Thanks for sharing all your knowledge, I think the consultant was surprised that I knew about Hughes Syndrome.

Best of luck to you all for the future x

Hello,

I lost my baby last Monday night (27th Oct) at nearly nineteen weeks. He was a little boy and we have called him Elliott. We were on holiday when it happened and the birth was truly horrific. I only was able to come out of hospital yesterday and am in pieces.

I am 39 and Elliott was an IVF baby with whom we had overcome so many hurdles to get to nineteen weeks. I was in hospital at 5 weeks with OHSS (a side effect from IVF) we thought we had lost him at 7 and a half weeks when I bled continuously and heavily for two and half hours (was probably other IVF embryo being evacuated) and had three other separate bleeds. Each time my darling baby hung in there and from about sixteen weeks I was finally thinking that this might happen for me.

However, I have been suffering from a huge fibroid, which although the medics have played down) at 20cm x 13cm was probably invovlved causing my uterus to open/allow an infection in.

I can't console myself with thinking we can try again because in reality I don't know that that will ever be possible. I nearly died giving birth and this pregnancy has been so difficult that I dont know, even if anything is possible, whether it would be right to subject my partner and myself to this again.

This email doesn't even begin to describe anything of what I feel, but have read some of the posts here I know others are in the same agony. Does anyone know a charity or site that deals specifically with this kind of horror - I think I need to talk to someone, either a cousellor, or someone who has been through this, face to face, to try to begin to live through it.

Elliott's devastated Mum.

neolara Wed 05-Nov-08 13:00:52

I'm very sorry for all you have been through SpringBlossom. To be so close and then to have it all snatched away. Life just isn't fair sometimes.

There is an organisation called SANDS which may be able to offer you support. Also, can I recommend that you start a new thread of your own on the miscarriage board as you will probably get more responses if you do that. Sadly, there are a number of other MNers who have been through similar experiences to you who I'm sure will be along soon and will be able to help you through this terrible time.

pumpkinseeds Wed 05-Nov-08 15:12:19

I just wanted to say that I know what you are going through, Springblossom, as I lost my baby last Friday (Halloween) at twenty weeks. We went for the twenty week scan, expecting to know whether we were having a boy or girl, to find that his heart had stopped some weeks before. I was given the tablet to shut down the pregnancy hormones and a was asked to come back in on Saturday to be induced, but went into labour Friday evening. My husband rushed us to the hospital, but I gave birth in the car park, which was so distressing.

We were discouraged from having a pm, which my DH is happy with, but I am not so sure. I can't stop crying - it's so hard to give birth and not bring your child home.

We don't even know at this stage whether this baby was a boy or girl (we have seen him, but it was impossible to tell) but have a feeling that he is a boy and have called him Georgie, which would also fit a girl.

Dear Pumpkinseed,

Oh god, I am so so sorry. I never knew what pain could be like til this happened to me - I never knew what it meant to scream silently, until this happened. The devastation is almost unbearable. Sometimes the crying helps and sometimes it doesn't. I can't stop thinking 'two weeks' ago I was pregnant...

Will the hospital be able to help you with finding out whether Georgie was a boy or girl? Have they offered you much in the way of help about what will happen next with Georgie? We are probably going to a burial for Born too Soon babies on Monday when Elliott will be buried with two other babies who were recently born too soon. This is on the IOW where we were on holiday when the miscarriage happened. I am in agony over how to get through it... but he is my little boy and I have to go and say Goodbye and tell him how much I/we loved him and how we wanted him so much.

SpringBlossom

SweetPea99 Thu 06-Nov-08 09:30:30

Pumpkinseed, Springblossom. I'm so sorry for both of you.
PKS - my baby died in the same circumstances, and my hospital said they were not allowed to do a post-mortem because of the cost. As far as I can tell from these threads, that is quite rare. If you do have the opportunity to have a post mortem (and if it's not too late) then do think very seriously about having it. One of my biggest fears has been getting pregnant again without knowing if exactly the same thing might happen. Although they can't tell you why the death occured in 50% of cases, that means they can tell you why it happened in 50% of cases!
The hospital did do a chromosome test of our baby to see if there were any chromosomal abnormalities (there weren't) and they were able to tell us the sex of the baby (a girl).
Do look after yourself, you need to give yourself plenty of time to grieve. You have been through something extremely traumatic, but you will feel able to cope eventually (although you don't need to now).

pumpkinseeds Thu 06-Nov-08 14:29:33

SpringBlossom - screaming silently describes it exactly. I have to shut myself away and quietly howl. I can't believe you were on holiday - how terrible for you to be away from home at a time like that. You must have been so ill. At least I could go home the next day. A lovely midwife who specialises in this type of thing has been to visit this morning and brought Georgie's photographs, which helps a little. It makes him seem more real. She says we will probably never know what gender he was as we are not having a pm. I know what you mean about saying goodbye to Elliott (what a lovely name, btw) as we initially said we wouldn't go to Georgie's cremation but have changed our minds.

Are you having nightmares? I am having terrible trouble sleeping since last week, which isn't helping.

Sweetpea - The doctor and the very nice midwife who visited this morning (I have had very good support from my hospital) have said that Georgie was too small to tell anything conclusive from a pm. They were quite adamant about it. I already have a son who had a significant heart problem - he is fine now after surgery - so the twenty week scan was also a cardiac scan. So I would have liked a conclusive answer. But the doctor seemed to think they would not be able to tell whether that was the problem at this stage. I don't know, I am so wobbly at the moment I feel that they are walking all over me.

I can't believe that this has happened to so many of us. It never occured to me that this could happen. And everything around me is a reminder.

joyfuleyes Thu 06-Nov-08 14:39:06

I lost my son at 18 weeks in the summer. It was actually my second unexplained second trimester loss (first was earlier though). I was very aggressively investigated & a PM ws performed on the baby - nothing abnormal at all was found. I'm pg again & am being treated at the fetal/maternal medicine unit at the JR in Oxford, on the basis of my history they're treating me with clexane/aspirin/steroids.

SpringBlossom, Pumpkinseeds I'm desperately sorry for your losses The early days are hellish, pure agony. You will learn to live with the grief but you'll never be the same again.

pumpkinseeds Thu 06-Nov-08 14:48:25

I am so sorry, joyfuleyes. I can't even imagine how it felt to lose two of your babies. It's heartening to hear that you are having another - I am desperate to be pregnant again but terrified at the same time. I know what the aspirin and steroids are for, but what is clexane, if you don't mind me asking?

Hi all, PKS - I think that phrase 'it never occurred to me that this could happen is just so apt'. Having got through the early days of worrying about miscarriage (which seemed to go on a lot more than just early days - I had my last bleed at 14 weeks) I was really hopeful that I/we could settle into a few weeks of enjoying being pregnant before the inevitable worries of an early delivery crept in. I hadn't even heard the term 'late miscarriage' let alone contemplated that it could happen to me.

I am having trouble sleeping - I haven't dreamt about Elliott though. Mainly I wake up drenched in sweat and full of fear. I think that what has happened is such a confused mess of differing agonies. The shorter term, probably least important, is the shock and fear caused by the delivery and their inability to stop me bleeding afterwards. I have never been in that situation before and have never experienced fear about something that has already happened before.

Far more inconsolable is how I feel about Elliott. I spent a long time crying on the phone today to my friend about whether Elliott had known how much I wanted him. Because the pregnancy had been so fraught it made it very hard to just come out and say Hurrah I'm pregnant! I was so petrified of the worst happening. What a waste - now the worst has happened and what happens if my darling little boy didn't know that I wanted him so badly with every little bit of me?

And then there's the whole 'what next' question. Will I ever have another baby? Thinking about this may actually send me mad as there are so many hurdles to overcome. I know everybody will say don't even think about it yet but it's not possible to. Or at least I don't know how not to.

Clexane - I had this in early days of pg - thins your blood to stop throbosis as far as I am awre.

hopefullypregnant Fri 07-Nov-08 13:20:18

I am so sorry for those of you who have lost babies at such late stages. My heart goes out to you.

My baby wasnt able to live either, but the signs were caught at the 12 week scan, and my baby died on 24th October. We were offered a postmortem and are awaiting results, but I wasnt even 13 weeks when all this happened - so I cant imagine a 20 week old baby could be too small for a postmortem.

Good luck with it all - it's just one day at a time - I find night and mornings the worst and every time I return to a place I think, last time I was here I was pregnant...

Hugs to you all. xx

pumpkinseeds Fri 07-Nov-08 15:57:29

Hopefullypregnant, I am so sorry for your loss. You must still be so raw. Mornings are dreadful for me too, and I go to bed at night before my husband because I know I am going to cry myself to sleep. Then I keep the tv on all night, tuned to BBC News 24 because the dreams that I have are so awful. I can't walk on the beach now (we live by the sea) because that is where I would imagine myself with my baby, showing him the boats and the gulls. I agree with you - one day at a time.

I have to say that I thought that he looked big enough for a pm, certainly well developed anyway. But the doctor was asking for our funeral plans and thoughts about a pm half an hour after I had given birth to my little stillborn baby alone in the hospital car park, of all places, so I wasn't really thinking straight. The doctor and midwife told me he was too small, so I just agreed. In hindsight, and particularly hearing other stories (including yours - thank you for telling me) I wish I had pushed for it but his cremation is on Monday and I can't bear to change the plans now. I just hope the blood tests show something.

Did they say when you would hear the results of your little one's pm?

Best wishes
pm xx

hopefullypregnant Fri 07-Nov-08 16:46:47

Pumpkin, thanks for your message. How awful to give birth in the carpark. I can hardly imagine it. And I know what you mean about making decisions. I was lucky in that two consultants recommended a pm to me, in my case not just to find out what happened but to see if there is some genetic problem with me. I hope there isn't - I have a one year old DD and everything was straightforward with her. I wish you courage on Monday with the cremation.

My situation is odder because the nuchal scan and subsequent tests showed baby alive but unable to continue living, but it wasnt clear WHEN the baby would die, whether it would be soon or after going to full term. It was just clear baby couldnt survive life. So I had a termination. I hate writing that and the guilt is immense, on top of the grief, even though I know it was right.

They said 6-8 weeks for postmortem and chromosomal test results, though I think it's the chromosomes that take the time. We are waiting to hear from our hospital when the pm is done so we can have the cremation. I dont have photos other than of the scans; it's different when the baby is smaller, I think.

I have horrible nightmares, the worst of which is ironically a happy dream that the baby is still alive, then I wake up and relive the reality. The other nightmares are more like normal nightmares. And I often cry myself to sleep too.

pumpkinseeds Fri 07-Nov-08 17:12:08

Hp, how terrible that you had to face that decision. Do you have plenty of support, from home or the hospital - preferably both? I can't believe so many women go through this. Everyone I know in RL has sailed through their pregnancies. I always assumed that it would never happen to me and I'm sure you did too. I'm still reeling from it all.

hopefullypregnant Fri 07-Nov-08 18:31:31

I think I thought this happened to other people, and not many people. Now I am reading the Miscarriage boards and realize it happens to lots of people. My DH told his secretary what had happened, and she suddenly told him she had had happen exactly the same thing some years ago and told noone. I am half reeling and half apparently coping and overall dazed, I think.

I hope the cremation helps a bit.

..and happens to people in such dreadful ways. Hopefullypregnant and PKS - you've both suffered such terrible traumas in different ways. I guess people don't talk about these things becuase they are so awful. When I was pregnant I remember coming onto MN and seeing there was a discussion board for Late Miscarriage and quickly flicking on by. I couldn't begin to contemplate at that point how horrible it would be to be on such a board. And here I am two weeks later...

Unbelievable.

Very best wishes to you both, SBxx

hopefullypregnant Fri 07-Nov-08 20:18:42

SB, I just want to say: I am sure Elliot 'knew' how much you wanted him. Your body hung onto him so fiercely through all the bleeding [interestingly - I had bleeding too - they said bleeding was normal and no problem - in the end it wasnt] and everything, and you suffered immense trauma giving birth to him.

Elliot is at peace now, I do believe that; he never suffered.

I identify too with your fear of believing in it too strongly. Now I know it doesnt make any difference: the pain is terrible regardless.

You have been so brave and I really hope things improve for you. Hugs. xx

Thank you HP. Everything you said just there is a comfort. The way you talk about him and use his name makes him so much more real and though that makes me cry, helps me so much.

Talking to women on here offers the tineist bit of comfort and I really thank anyone who has taken the time to read this thread of misery and share thoughts.

SBxxxxx

hopefullypregnant Sat 08-Nov-08 13:57:17

SB, I know what you mean about tiny comfort. Talking here has helped me.

I havent told many people in RL that I was pregnant. For that reason, I worry that my baby will never really exist to anyone, other than me and DH. I suppose that's how it is. I am glad that Elliot can be named by more people and mourned; that is right.

Hope your Saturday is going as well as can be expected; I hesitate to say going well.

Hi HP,

I am so sorry you haven't felt able to tell people that you were pregnant. Maybe in a little while you will feel able - and I think you will find people are very sympathetic. What you've gone through is deserving of everybody's sympathy; I don't mean you should hawk your terrible loss around to all and sundry, but don't be too frightened to tell cos I think you might end up depriving yourself of some very much deserved comfort. You deserve that - you've comforted me and I would like to think you are able to find some of that for yourself, either on here or in real life.

My Saturday was pretty awful really. It's less than two weeks and I can't start to 'pull myself together'... my mother, who loves me very much and who is staying with us at this time, said today, "You don't want to do anything to help yourself; you need to try some things to see if you can feel better." I know she means well and is scared I am going to drop into a pit of despair out of which I will never climb but - LESS THAN TWO WEEKS?

How did you get on today?

SBxxx

hopefullypregnant Sun 09-Nov-08 07:38:05

I find it is getting harder, actually, not easier - it's two weeks for me too, two weeks and two days now. I have a daughter and that means I can't slump too far, as she needs me; worryingly though, sometimes I am struggling not to. I think your mum just wants you to be okay - it isnt that she isnt sympathetic, it's that she can't stand seeing you in so much pain. But then you can't deny what you feel and you have to let the grief come through. There will be so many milestones to get through - for me, there were 16 week blood test apptments, 20 week scan, 34 week scan [because consultant worried about baby size after she was small at 42 weeks last time], 36 week consultant apptment, all those dates seem engraved in my memory, plus the due date. I wish I didnt have such a good memory.

Anyway I am glad your mum is with you. Just having people there does make it easier.

We just have to remember: one day at a time... Good luck with today.

Hi HP,

Tomorrow is the funeral. We are going down to the IOW tonight. Then we are meeting the midwife at 9.30am tomorrow morning and she is going to take us to the cemetary for the service. I had a terrible weekend and P and I 'argued' for the first time (we don't really argue, more terse words but I know it rates as an argument for us). This morning I feel even worse cos I feel like I should be pulling myself together. We did resolve things - he said it was ok for me to be as upset for as long as I needed and to let it show - but I feel like I did something wrong and I have to hide how I feel. Which I know is not what he wants but now I feel so confused and like I am hiding away.

Oh god. I am so upset. I am scared everybody is going to give up on me cos I won't be able to get over this.

hopefullypregnant Mon 10-Nov-08 20:59:28

SB, don't beat yourself up - this bit is really tough and you're having to go away from home for it.

I think other people struggle to see you in pain and they want above all to make you better, but in doing that they risk ignoring your suffering. It's well-meant but it's hard for you and inevitably leads to cross words at the very least. Just let it happen and don't think people'll give up on you: it's cos they love you that they want you to be happy; they just havent realized you need to express your grieving.

Big hugs for tomorrow. I have all this to come,as our postmortem is in process still. I wish you some peace tomorrow. xx

Hi HP,

Well last 24 hours have been very difficult but again, if nothing else, I have been really touched by the kindness of others. Two midwives who looked after me at IOW turned up today and attended the service with us. Four little 'Born too Soon' babies were buried in one tiny coffin. There was a very nice non-religious service that I did find a bit comforting. The lady doing the readings talked about a mother's grief being the worst, but also how a father struggles because those he loves most are in pain, and I felt she was describing P and I. She also talked about the cord between mother and baby - the physical cord but also the intangible cord. I feel like I can tweak this and Elliott will know and likewise Elliott will always be tied to his mummy, who loves him so much, by this invisible cord.

So, maybe I am saying there was some comfort to be found HP. It doesn't seem like that cos I've spent so much of the day in tears. But for this five minutes, typing this to you I feel calmer.

Do you know when you will be able to bury your little one?

XXX

hopefullypregnant Wed 12-Nov-08 21:19:43

Hi SB

I am so glad that you were shown these kindnesses and that the service 'helped'. I like the idea of there being a non physical cord too, or at least an intangible one, between mother and baby. When I was pregnant with DD, I felt sort of invincible - as though she and I were together against the world; I was never alone. That changed this time because I had so much bleeding before the nightmare began that I struggled to find the same connection, and of course that in itself makes me feel guilty.
How are you today?
And how are you, Pumpkinseeds?

I wonder when our service will be - the postmortem is taking ages.

I am full of cold and physically exhausted so am off to bed, but sending many hugs. xx

Hi HP,

Sorry you are feeling rubbish with a cold.

It's interesting to hear how you felt being pregnant with DD - I am totally struggling with the idea of not being pregnant - constantly reminding myself that 17 days ago I was pregnant with Elliott. Yet, it was always such a difficult pregnancy that I never really relaxed and enjoyed it. I've been wrestling with the guilt I've felt over that in case Elliott didin't know how much I wanted him. But in my letter at his funeral I told him several times very clearly what a wanted and loved baby he was and it was really important to say those words out loud. It seems from reading posts here and on Sands that PMs can take a while to come through. Not being able to bury your baby can leave you feeling in a real limbo I would imagine.

Much as I dreaded the funeral and felt it would offer some finality (which I can't bear) it did offer, as mentioned, some grains of comfort and for that I'm grateful. I've learnt one thing through this process - that people who can deal with your grief and the passage from life to death, are really special people who do an amazing job. e.g midwives, ministers, even friends who have an ability to talk openly about what is happening without getting too involved in your agony. One of my friends, not the closest, has been talking and texting about Elliott as if he were a real person and it has been very nice that she got immediately and without discussion that I needed him recognised as such.

Anyway HP, I am blathering on. I wonder if you want to continue chatting not via MN? I am set up on here so you can contact me via email if you choose. It would be great to hear from you, but do understand if you want to just keep it on here.

Hope you feel better from your cold soon, SBxxxxx

pumpkinseeds Thu 13-Nov-08 14:52:40

Hello HP

Thanks for asking - I am having a better day today and beginning to see light at the end of the tunnel (may be that is wishful thinking at this point). My lovely bereavement midwife has just left here and I realised that I am feeling so much stronger than this time last week. Still tearful but coping better. She is very good and says she hopes to see me back at the hospital in better circumstances very soon (we are planning to try again). She was so positive - it makes me feel that a new pregnancy could be a reality.

How are you, HP? That's all you need - a cold on top of everything else. I hope you feel better soon.

And SB? Thanks for your message - I have sent you a rather waffly (sp?) one back. I should also say, after reading about your weekend, that I had a completely over the top rant on Saturday at my oldest son (visiting from uni and grumbling because everyone was moody) and, despite being the most indulgent mother in the world normally, I actually made him leave. He has apologised, I have to say, but the midwife said it was a healthy sign that I was asserting myself. So maybe you and P needed to quarrel, if that makes any sense. Who knows?

Take care, both of you - ps xxx

hopefullypregnant Thu 13-Nov-08 19:28:49

Dear PS and SB,

Would love to contact either or both of you off Mnet but am not set up for CAT or whatever it's called here! I will investigate it though. I would put my email address here but it's my name, so I would be no longer anonymous!

SB - you were so brave to read out the letter. I couldnt do that, I don't think. Part of the problem for me is guilt at the termination (though there wasn't a real choice).

You're right about special people. I've hardly told anyone but I cant bear pity. I want people to be normal about it. I suppose in telling people you find out who those special people are.

PS, asserting yourself is probably a good sign, and arguments are too I think - both are ways of letting off steam/letting things out/communicating the frustration and anger.

My DD's 1 today, on a positive note... and teething... on a less positive note...

Hugs to you both xx

pumpkinseeds Thu 13-Nov-08 20:29:17

HP, I couldn't set up the CAT thing either, so my email address is on the other thread that we used, if you want to get in touch. I won't take it amiss if you don't! I understand fully if you want to stay anonymous - that's the beauty of MN. But I would love to hear from you.

I haven't really talked to anyone about it all either - my big horror is that I will break down, as I am quite a private person. But I told one mum in the playground today and it wasn't too hard, so maybe tomorrow I'll be braver .....

On the subject of being brave, I can't imagine how much it took to choose the right way for your little one. My husband reminded me yesterday that I said that my biggest horror was having to make that decision, which is why I refused the amnio despite a 1 in 58 result. You are obviously a strong, loving mother who could face reality and make the best decision for her child. There is no guilt or shame in that.

Happy Birthday to your daughter, btw and I hope that tooth erupts soon - I remember those days well (and those awful, Calpol-filled nights)

Take care xxx

mum2jai Fri 14-Nov-08 00:36:43

I just wanted to say how sorry I am to hear of your losses. I lost my baby, Jai, at nearly 21 weeks on 5 June. I did come onto this thread a little while after and I still come back here from time to time - just lurking.

But I couldn't see your posts and move on.

I feel for you sad sad from the bottom of my heart. The early weeks are hell but you do move on. A friend of mine has just lost her baby at 13 weeks and seeing her go through it all is horrible but it makes me realise that my grief has changed - I still think of him almost every minute of every day but my grief is not so all consuming - and I'm stronger now.

His due date, 18 Oct, was hard again and I think Christmas and my 40th birthday in January will be grim - I thought I'd have a little one in my arms. But we have to get through it somehow.

I think the process of giving birth makes you bonded to your baby, whether the baby is alive or dead. And thank god for that bond - we have shed a life's worth of tears for our babies - and they will never be forgotten.

I couldn't bear the thought of the funeral or the PM at the time but we had both. And now it helps to have had them. As expected we don't know why Jai died - but we have a whole load of information that shows us that things are normal which is reassuring. So I would get as much testing as you can.

In the meantime I wish you all peace and strength. I'll be thinking of you. xxx

Hi Mum2Jai,

Thanks so much for your post.

Your sentence, "I still think of him almost every minute of every day but my grief is not so all consuming - and I'm stronger now" gives me hope that I can get through this. At the moment I am crying most at the thought of leaving Elliott behind somehow; that if I 'get over it' or 'learn to live with it' I am leaving him behind, or worse betraying him somehow. I've cried a lot of tears on this subject the last few days and I haven't resolved for myself how I am going to get through this bit, find a way of living with this guilt and sense of loss.

Also, the idea that you are bonded to your baby by having given birth to him,. I haven't been able to think about this too much yet, but I I think you are right. There isn't much more powerful thing in the world than than giving birth. That expereince you share must bond you somehow.

Jai's Mum - I'll be 40 in March and I am dreading it too. My PH says what does it matter you've just been 40 times round the sun... big deal. Well, I know what he means, but I also know how loaded a fortieth birthday is when you are tying to be a mum. I don't know how I am going to get through it either, but I expect we will somehow...

Best wishes,

SBxxx

HP - my email address is my name too! However, this is my partner's more anonymous email address - if you just drop him a line and ask him to forward to me we can be in touch off here, if you still feel like it:

hibbert_2@hotmail.com

Hope the teething has calmed down... xxx

HP - if you do mail my partner, can you put FAO of SpringBlossom in Subject so he knows what it's about? Just thought otherwise he might think it's spam...

hopefullypregnant Fri 14-Nov-08 21:31:02

Hi all

MumtoJai, thanks for the post and for the understanding. I am glad that you have moved on and feel the grief differently now. Good luck with the milestone dates.

SpringB and PS, I've emailed you both (well SB, your partner!). I forgot though when I emailed SB to say who I was - it's me though, being dippy! I hope you two are doing okay today.

PS, I wouldnt have an amnio with risk of 1 in 58 either. My first nuchal scan showed a risk of 1 in 2 of Edwards and Patau, 1 in 4 of Downs, and a nuchal score of over 8 that rose to over 10 within 24 hours, plus other factors that got worse/became more evident very quickly.

SB, I dont think you need to worry about forgetting Elliot. Grief doesnt mean forgetting: it means learning to live with the memories and with the loss. You will: we all will. It just takes time and courage and probably a whole lot more.

Hugs from me to you all anyway. xx

WantsToBeAMan Sun 11-Dec-11 15:18:26

Is it possible to ask for a c section if you have a miscarriage post 20 weeks?
Not on the NHS, but if you're going private.

If I was to go through this, there is no way I would agree to be induced and go through L&D. I am ashamed to admit, I would not want to hold or name the baby either. sadsad

I think I would cope better that way.

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