Late Miscarriage - What tests did you have?

[SweetPea99]

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

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

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

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

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

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

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 .

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 .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!'

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.

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.

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!

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.

(((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.

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.

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

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

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.

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.

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

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).

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.

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.

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.

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

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

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.

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.

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