Late Miscarriage - What tests did you have?(145 Posts)
This follows on from Hope4Future's thread but I wanted to make the question very specific.
We went to our 20 week scan in May and discovered that there was no heart beat. Our baby had died about 2 weeks before (when I thought that the sickness and nausea had finally started to go ), I had an induced labour and finally delivered about 16 hours later.
We were told that post mortems rarely give any results (?) so our health authority doesn't do them. The only test we had was a genetic one, which showed that she didn't have any chromosomal problems. She was also exactly the right size for her dates.
Since then we have not been offered any tests or follow up, although the consultant said that he would see us at 15 weeks in the next pregnancy to swab me for infection. I have since spoken to the miscarriage assoc. and my GP who both seemed a little surprised that no tests had been done. The doctors seem willing but not well-informed. I don't think the consultant was a proper baby guy because the lady he saw before me was about 90!
What I need to know is: What tests should I have? What should I be asking for? Has anyone gone private?
I am now thinking about ttc again, and it has really brought it home to me that I cannot just sleep walk into this hell again. Thank you for any advice you can give.
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.
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.
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!
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 ). 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.
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.
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!
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 . 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
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.
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
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.
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)))
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 )
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.
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.
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.
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.
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.
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.
SnowWombat - so so sorry for you . 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.
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
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.
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.
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
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.
(((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.