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1:47 on combined test. 20 week loss last year. Very scared!

(35 Posts)
SpanielFace Thu 09-Jul-15 21:03:02

Hi,

I am 13+3 with my 3rd baby. My eldest son is almost 3 and is fine. My second was lost to a late missed miscarriage (he died around 18 weeks, discovered at the 20 week scan). We had a post mortem but there was no reason found, he was essentially a healthy baby, and we were just told that it was one of those things. My nuchal fold / combined blood test tesults have come back as a 1:47 risk factor. I don't know my precise figures but she said NT was slightly high (but it can't have been dramatic as nothing was mentioned at the scan), hCG was normal and PAPP-A was low. She thought it was the PAPP-A that was the reason the risk factor was high, as well as my age (I'm
35).

Can anyone tell me any positive stories? I'm so frightened. We've always said that we wouldn't continue with a Down's syndrome diagnosis, so have booked am amniocentesis, but they can't do it for 2.5 weeks. I gave birth to one dead baby already, I honestly don't know how I would get through it if this amnio is positive for a chromosome disorder. sad

HarryLimeFoxtrot Thu 09-Jul-15 21:11:58

I didn't want to leave your post unanswered. I can understand how worried you must be. Perhaps try and focus on the fact that a 1 in 47 risk factor still means a 46 in 47 chance that you won't be affected.

SpanielFace Thu 09-Jul-15 21:19:17

Thanks. Yeah, I'm trying to focus on that. So there is an almost 98% chance that the test will be negative. It's just we've been on the wrong end of statistics before. sad

Appleblossom82 Thu 09-Jul-15 22:46:24

flowers you have my sympathy. its a horrid time.

I had 1:85 risk, had harmony. The wsit almost killed me. Was hell but it came back clear thank god.

Have you considered Harmony instead of cvs?

StAlphonsosPancakeBreakfast Thu 09-Jul-15 22:52:37

You have my sympathy, I got a 1:20 chance based on similar results just a few months ago, and had CVS and an agonising wait before we got the all clear. I'm now nearly 23 weeks and I can feel him/her kicking away in there merrily.

I was told I'd have to wait longer for the amnio so went for the CVS instead, is that an option in your case? Additionally, the Harmony is maybe a possibility - the timescale for getting results would be longer than a CVS, but shorter than for your planned amnio. It's not available on the NHS so I thought it would be difficult to access, but my rural hospital was happy to take the samples and pass them to a private clinic if we wanted to go down that route.

It must be doubly hard given your previous loss, I totally understand (I was very stressed myself due to an immediate family history of fatal abnormalities) but just hang in there. The odds are really strongly in your favour. Be nice to yourselves, do anything you can to pass the time (good box sets recommended). flowers

SpanielFace Thu 09-Jul-15 23:15:50

Thanks. I decided against the Harmony because it still gives a risk factor, doesn't it? I was worried that if it came back as high risk, I'd still want to have an amnio to confirm. We were offered CVS but was told it carries a higher risk of miscarriage (although not much - 1% rather than 0.5%) but for that reason decided to wait for the amnio. Part of me wonders if that was the right decision, although there's still time to change my mind I suppose.

Appleblossom82 Fri 10-Jul-15 07:20:54

Harmony gives a risk factor but its basically something like 99.9% accurate. Our genetic counsellor told us in Australia they now use harmony diagnostically and dont routinely do invasive testing. You either cone back 1:10,000 or high risk (or in some instances the test may not work but you get a retest or refund if that is the case). We were 100% reassured by harmony and our 20 week scan was perfect.

Appleblossom82 Fri 10-Jul-15 07:22:31

If it came back high risk yes you would probably still need amnio, but chances are massively in your favour that it wont and you can avoid the risk and an unpleasant procedure flowers

Appleblossom82 Fri 10-Jul-15 07:23:41

The wait for us was 8 days

StAlphonsosPancakeBreakfast Fri 10-Jul-15 11:45:26

Agree with Appleblossom, yes, our genetic counsellor said the same, and said that it'll be regarded as close enough to 100% odds to be offered as a standard test at some stage.

So it might be worth looking at the options again; you can change your mind if you wish, or discuss further with the genetic counsellor. The other thing to say is that the odds of miscarriage on CVS aren't 'set' - a lot of the risk factors are based around the experience of the individual practitioner doing the procedure. We asked what the practice history of the consultant doing the CVS on me was, and my understanding is they are obliged to reveal full details. My consultant had not lost a baby to miscarriage after CVS in fifteen years, so I was happy I was in experienced and competent hands.

Thinking of you lots.

SpanielFace Sun 12-Jul-15 20:43:33

Thank you. I'm up and down all the time. Sometimes I think that the odds are good, of course we will be fine. Then at other times I can just imagine the nurse giving us bad news.

I've been in an online support group for women who've had a 2nd or 3rd trimester loss, and are trying for another baby. This baby took 10 months to conceive and has been so much wanted, and I've found the whole process of ttc while still grieving for the son that we lost to be really upsetting. So the group has been brilliant support. But I've had to leave, as I told them our news and so many of them were horrified that I'd consider terminating, and there were some really nasty things said. So now I just feel really alone. I'm worried that the baby with have Down's and we will decide to terminate, and I'm terrified of having to deliver another dead baby, except having to make the choice this time. And even though I know it's what we'd do and that it would be the right choice for us, I'm scared of how I would live with the guilt afterwards. And I'm also worried about how we would tell people, and what they would think of us. Which I know is the least of our worries, really, but my experience on the group has been upsetting. I just really hope that we don't havd to make a decision at all. I'm trying to think positive but finding it hard. It was only about 1% chance of me miscarrying at 18 weeks last time, but it happened anyway, so I do find it hard to find much comfort in statistics.

I think we are going to stick with our original plan for an amnio. I spoke to the genetic counsellor who said that they would need to refer to another hospital (about an hour away) for a CVS, and it couldn't be done until the end of this coming week. So it would only be 10 days or so earlier. On that basis, I'd prefer to go for the lower risk option. We've discounted the blood test, as I'm worried it will be another high risk result and we will end up having an amnio anyway. It seems like it would have been a good alternative to the original screening though - I wonder if they will do it instead of the nuchal fold etc in the future?

Thanks for the advice and support. It's going to be a really long 2 weeks. I'm grateful I have DS1 to keep me busy and distracted, and all this has made me even more aware of what a little miracle he really is.

KittyandTeal Mon 13-Jul-15 07:55:36

I'm so sorry you've been given a hard time on the other forum. How awful after everything you've been through.

All I can say is that those women will never know how they feel unless they are in that situation. You must make the right decision for you and your family.

It may be that there is no decision to make. I really hope that's the case.

StAlphonsosPancakeBreakfast Mon 13-Jul-15 09:46:50

Oh, you poor thing. I echo KittyandTeal (hi Kitty, you star!), you really just don't know how you're going to feel until you're in that situation, and I am sorry you're not getting the support from them that you should.

Come talk to us any time, I know how tremendously 'unreal' this whole period can feel.

SpanielFace Wed 22-Jul-15 22:03:40

Hi all. 5 days to go until my amnio and the anxiety is starting to get the better of me. I've started to feel faint movements I think, and the heart beat is so strong (I have a home Doppler due to the massive fear I have had of another late missed miscarriage), and it's so hard to imagine there could be anything wrong.

Can you humour me, just for a minute? I know having a nasal bone is not an indicator that everything is ok, but I've read that 60% of DS babies have no nasal bone at 12 weeks. My scan photos showed a very clear outline of a nose - this looks like a normal nasal bone, doesn't it? I know I shouldn't try to self-diagnose but this waiting is driving me crazy. What do you think?

SpanielFace Wed 22-Jul-15 22:05:32

PS thanks for the advice and support. Other than the period when I knew our son had died and I was waiting to deliver him, this is the worst I have ever felt. I'm dreading the test and the results, but wish it could be sooner so I could just have it over with.

StAlphonsosPancakeBreakfast Wed 22-Jul-15 22:06:51

Hi SpanielFace! You poor thing, it's totally understandable that you're finding it really tough.

I was in exactly the same situation - I knew that seeing the nasal bone (really obvious on the scan and pictures) didn't necessarily mean everything was OK, but it was still definitely something to hang onto. Your baby's nose looks just dandy to me.

I hear you on the self-diagnosis - it's easy to say "step away from Google" but sometimes the alternative is just even harder.

Thinking of you lots.

bsmirched Wed 22-Jul-15 22:21:04

We had a 1 in 15 result after the combined test and also had an amnio. Like you, I'd definitely felt movement by the time we had it. The amnio results took 3 days I think which were horrifically long but were fine. The odds are still massively in your favour, and yes, I'd agree that the nasal bone is very clear!

SpanielFace Wed 22-Jul-15 22:36:36

Thank you! It's something to be hopeful about, at least. I'm trying so hard to stay positive but struggling a bit. I'm working Friday, Saturday and Sunday so at least I will be kept busy before my appointment on Monday.

Those of you who had an amnio, how much did you need to rest afterwards? I have arranged for DS to go to his grandparents the following day and I will be off work, so should be able to properly rest that day, but I'm wondering about the rest of the week? I've booked the full week off work (I only do 2.5 days anyway) but DS is a 35lb almost-3 year old, and I'm wondering if I should ask my mum or a friend to come over for the next couple of days and help me with him, just so I can rest. I'm not as worried about the miscarriage risk as I was, having done some research, but obviously I want to minimise it.

Preminstreltension Wed 22-Jul-15 22:48:59

I had amino which resulted in tmfr. I just pottered around after for 48 hours. No rest needed. BTW I had medical termination under GA at 16 weeks. I couldn't bear the idea of labour and the termination was ok in that respect. But your odds are massively in your favour although I can understand why this is such a worry for you.

With regard to miscarriage I was told with my subsequent cvs (all clear) that if you can see the heartbeat after the intervention then 95pc of the 0.5-1pc risk of miscarriage is gone. So you should be able to feel reassured about that almost immediately.

SpanielFace Thu 23-Jul-15 16:52:53

Thanks preminstrel. That's reassuring on lots of points. I had read something similar elsewhere about the heartbeat at the end of the procedure, so that's good to hear. Also, I didn't realise they would allow a medical termination at 16 weeks plus. I'm not sure what the pros and cons are. With my son, I wasn't offered anything except induction, and while it was upsetting I was quite proud afterwards that I'd delivered him and had a chance to hold him etc. He was named, we had photos, footprints, a little service when he was cremated. I'm just not sure whether I could do it with a baby that I'd chosen to terminate, whether it would help me come to terms with it (which it did with my son), or whether it would make it all worse and harder. It's all such a lot of fucked up emotions. I thought my loss last year was hard enough, and it was, but at least there was no guilt mixed into it. sad

Just hoping so much that there is no decision to be made. I had a dream last night about the amnio, that the doctor had said it had gone well, but when I looked down I had a hole in my abdomen like I'd been shot, that was leaking dark red blood. Horrible. Thinking positive is clearly not getting through to my subconscious!

StAlphonsosPancakeBreakfast Thu 23-Jul-15 20:46:29

I think it would be unrealistic for you to be all positive all the time, without going mad! It's a horrible dream to have but it's only natural for your subconscious to be processing all the possibilities in any case - particularly with your terrible previous loss. flowers

I reckon for me the answer was to allow myself periods of time where I allowed myself to look at the worst case scenarios, but then always to make sure I pulled myself back by reminding myself that statistically the odds were still in my favour. It might be a bit micro-managey but I remember one day setting the alarm for twenty minutes and allowed myself only that period of time to think totally about termination, and then making myself stop at the end of it. grin

SpanielFace Mon 27-Jul-15 17:13:10

Thanks. I had the amnio today and it went well. Far less painful than I was expecting, and the baby had a heartbeat and movement at the end. So now we just wait for results.

KittyandTeal Mon 27-Jul-15 17:19:38

That's great news. My experience is that an amnio is more an odd feeling than painful. Saying that mine was done on the same day so I didn't have weeks to work myself up (like I know I would have done!)

Fingers crossed for your results. Are the doing rapid ones for you?

herethereandeverywhere Mon 27-Jul-15 17:29:53

I'm slightly late to this but glad to hear the experience with the amnio went well.

I have a friend who got a 1:2 risk factor for her combined test. The [completely unprofessional IMO] sonographer scanning her told her that the nuchal fold measurements were 'off the scale'. She went on to have CVS and the results all came back normal. She had extra scans up to giving birth for checking and reassurance.

Her son was born perfectly healthy. He's coming up for his 4th birthday and is a normal, cheeky, funny gorgeous boy. Absolutely nothing wrong. So there is hope and it can just be 'one of those things'. Fingers crossed for you. X

SpanielFace Mon 27-Jul-15 17:57:27

Yes Kitty, 3 days for the Downs/Edwards/Pataus results, so we are expecting them Thursday or Friday at the latest. Then 2-3 weeks for the full chromosome study. I have my routine 16 week check on Thursday morning, and the midwife said she would listen for the heartbeat, so that should be reassuring (I hope). I've also been told that if the chromosomes are all normal, I will have 3rd trimester growth scans as the low PAPP-A can be linked to IUGR (but not always). So I feel that I'm being well looked after. I've just got to hope the results are all ok now.
Here there, thanks, it's great to hear positive stories. 1:2 must have been terrifying for her.

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