Bad news after combined test

(54 Posts)
lozster Mon 28-Jan-13 13:57:27

Given a 1:4. Am 40 and pregnant after ivf - this has driven the score plus a really high hcg 5 times normal. Am 13 + 5 and have been offered 3 things 1) detailed scan to look for soft markers 2) cvs - I guess pretty much immediately 3) amnio after 15 weeks.

I was resigned to this (and what may follow) but it still hurts. This is my last chance after 13 rounds of fertility treatment.

I know it's not quite game over but I daren't get my hopes up. Sorry, there is a question lurking in the gloom - any advice on cvs over amnio? The soft markers enhanced scan won't be enough for me though im glad my health authority do offer it. I know about the national stats on miscarriage and asked the nurse about the hospital specific stats too which she claimed were 'in line'. I'm tempted to do cvs to get the result sooner but I'm not sure if it is via the cervix? During my ivf the staff had major problems getting a catheter in due to a twist on my cervix. Would a cvs be a similar process?

Also, how long did you need (or want) to be off work following cvs or amnio?

Thanks

suzyrut Mon 28-Jan-13 16:16:33

Hi,

I'm so sorry to hear you're going through this it s a terribly worrying time. I'm afraid I can't answer all of your questions but I had a CVS though a couple of months ago so I can tell you how that was...

The process is fairly similar to an amnio, in that you have a local anasthetic and a long needle is inserted through your stomach. You are constantly monitored via ultrasound. They pass another needle through the first and scrape away some of the blood vessles from your placenta. It's uncomfortable rather than painful though the proceedure is worrying because of the increased risk of miscarriage.

You are entitled to ask about the specific statistics of the clinicial that will be performing your proceedure both for miscarriage rates and numbers of proceedures that they perform per year. I think CVS has a slightly higher risk of miscarriage however my consultant explained that as these were done at an earlier point in your pregnancy this may well be a factor.

I took 2 days off work following the proceedure and rested, I was fine and didn't have any cramping though I have had a number of episodes of bleeding post the proceedure which they are putting down to the CVS potentially.

Antenatal results are a charity that are supposed to be fantastic, they have trained counsellors you can speak to on the phone and their website is probably the clearest and most useful of all those I looked at.

The results normally take between 2 and 3 (working days) to come through and the hospital should arrange with you how you'd like to receive these. Mine took 3 and were fortunately all clear.

Good luck with whatever you decide and if you do have any other questions about the proceedure that I can answer let me know. In the mean time I'll keep my fingers crossed that you're one of the 3 in 4 where it's fine xxxx

lozster Mon 28-Jan-13 18:45:44

Thanks Suzy thanks

The hospital called to say that the first cvs they can do would be end of this week when I would be 14+2. I could have the amnio at 15 + 0 so on balance I think I will wait the extra 5 days though I'm not convinced the miscarriage risk is actually more from cvs anyway.

And thanks for keeping your fingers crossed for me too.

TheCyclist Tue 29-Jan-13 13:18:42

Hi lozster - have you considered the Harmony Test as an alternative to Amnio/CVS? Supposedly doesn't carry any risk of miscarriage. Not on NHS yet, but some private clinics have introduced it. Lots of threads on MN about it.

Best of luck.

Strix Tue 29-Jan-13 13:33:36

I had a cvs at Fetal Medicine Centre 2 1/2 years ago. I would recommend very highly. The needle goes in through your belly. i would recommend it. If you have to make a difficult decision I would think it's better made sooner rather than later.

I am so sorry you are in this place. It's terrible. And what you have already been through... Gosh I can't imagine. MN was very good to me in my time of panic. You are in the right place (but you probably already know that).

Good luck.

lozster Tue 29-Jan-13 13:48:45

Hi cyclist - thanks for the reply. Yes, I've read the threads on harmony and have looked at several websites. It is coming in at £750 - £850, plus costs to get to London or Cardiff. I think earlier it would have been an option but now I have the combined screen results I really want a diagnostic anyway. I know the harmony is as close as a screen can get to a diagnostic but I want a yes:no now not a ratio. Also, timing wise I will get my amnio results around the time I would get harmony back.

lozster Tue 29-Jan-13 14:01:32

Hi strix - thanks for sharing. I am now booked in for an amnio. I would have gone either way but OH wants less miscarriage risk. I am not convinced on the data showing cvs is riskier, none the less, the cvs result wouldnt get to me in time for a surgical termination (or it would be marginal forcing a very quick choice) so part of the advantage has gone. I would rather know sooner but I am already 13 + 6 so that ship has sailed. The past 7 years seems to have been one long slog. I just want one thing to be normal for us.

lozster Tue 29-Jan-13 14:10:02

Sorry - drip posting here - my brain is fried. What is driving my ratio is an extremely high beta hcg (5 times normal) though the nuchal fold measure is also on the high side of normal too. Does anyone know anything more about high hcg? I have googled and (clutches at straws) I have read that it can be increased by being vegetarian and by having had fertility treatment. Hospital knows of both of these things but I don't know if they adjust for them. Less cheerily I have also read that high hcg is indicative of problems with the placenta. Not good sad

Strix Tue 29-Jan-13 16:50:56

Incidentally, my name on here 2 1/2 years ago was persnickety. My nuchal was 2.8mm and I was 41. My score wasn't terrible. But it was considerably worse than my first two pregnancies.

My results were fine. And if it is any help, I asked a lot of questions and the doctor told me that most babies who miscarry after cvs/amnio do so because there is something wrong with them. For example, there is a risk of the heart stopping, but actually when that happens it is often a heart that had something wrong with it.

And just to warn you, that is one big ass needle. Big as in long. Just so you don't freak out when you see it. There was a screen where I could watch the needle go in and see where it went. But, I was terrifies that watching might make me flinch or jump. And you need to stay perfectly still. So I looked the other way and just asked them to tell me when they were finished.

Everything went fine, my results were good, and DS (who is now 2) is perfectly normal. i hope you have a similar experience. If I could go back, I would get that CVS earlier so I could have skipped all the worrying that followed the nuchal.

LillianGish Tue 29-Jan-13 17:22:29

Don't despair Lozster - I had amnios with both of mine. You are right to say your score is driven by your age - but even with that score the odds are still very much stacked in your favour. I remember when I had my first amnio with dd the hospital told me that while they had to give me the stats for risk of miscarriage they had never actually had any as a result of amnios. I think with scanning technology they can be pretty accurate these days.It is a big needle, but surprisingly not painful - actually I was more shocked by the noise it made (like a football bursting!). My dd was fine and getting the result helped me really enjoy the rest of my pregnancy. In fact I found it so so reassuring that when I was pregnant with ds I was actually hoping I would have to have an amnio (which I did) - it didn't seem such a big deal second time around and I didn't give it a second thought. Keeping everything crossed for you and holding your hand via mumsnet til you get the result (we should have a hand holding symbol!). Stay positive - when you think how far you have come this is just a little hiccup. I really think you will be fine.

lozster Tue 29-Jan-13 18:51:03

Thanks guys. The replies are appreciated 100%. I've been creating an electrical hazard this afternoon crying over my lap top.

Oddly, I am not scared (yet) of the amnio. I think I will close my eyes throughout as I'm not sure I want to see the little one or the needle. The foetal care consultant is scanning before hand to try to look for abnormalities too. The midwife mentioned the heart particularly but I would guess nose and placenta too.

I had the combined test only last Thursday and the staff couldn't believe that we hadn't told anyone. One midwife asked if we'd be celebrating and telling everyone that night. Another said I needed to join NCT and learn to treat my pregnancy as normal. I did feel better over the weekend and I looked online at some maternity clothes but still held off telling anyone or even filling in the Boots mum to be stuff. Everything seems set up for normality and I feel a bit of a freak or even party pooper for not being one of the normal ones. That's why your comments are so useful to me.

Did any of you tell work about the amnio or cvs if they didn't already know about the pregnancy? Also how long did you take off work afterwards?

LillianGish Tue 29-Jan-13 19:10:20

I didn't tell anyone apart from my mum, mil and sil - all of whom already knew about the pregnancy. I didn't announce the pregnancy to anyone else until I had the results - that's just me. I'd miscarried my first pregnancy and was very glad I hadn't told everyone so I remained cautious for subsequent pregnancies. I took a day off work for the amnio itself and took the following day off just to take things easy - I told my boss what was happening, but didn't make a genral announcement. Actually I felt completely fine afterwards -it was pretty much a non-event in fact almost an anti-climax since I had been so worked up about it. And Lozster you are normal (well as normal as anyone can be!) - try and think of it as a routine test, which is what it is. On the plus side if you want to know the sex of your baby (I couldn't wait to know!) the amnio will tell you for sure and once you get the results and know that everything is fine you'll be able to make your announcement without any niggling doubts or worries (apart from all the other doubts and worries and beset every new parent!!). In the meantime I think you and your OH can permit yourselves a little private celebration that you are over three months - after all you've been through so far that is quite some achievement.

littleanimal Tue 29-Jan-13 20:21:21

Hello I hope my story may help you a little. When I got pregnant I was really anxious as my brother has Downs (apparently this puts me at slightly increased background risk). I decided to see what my screening result was before making a decision about invasive tests. The nuchal was normal and my results came back as 1:3600 (I was 30). All well I thought, and stopped worrying. However it wasn't until my 32 week clinic appointment that they shoved a whole load of printed out results in my notes (nothing had been filed until then!) and I noticed that in the Combined test my HCG was 4 times normal. I then panicked for the rest of the pregnancy and was really cross with myself for not realising that I could have found out the actual figures from the test much earlier! DD was normal. Interestingly a few of my friends have had high risk screens purely due to high HCGs (5 and 6 times normal), all had CVS, and all had normal babies. Good luck - I know how anxious this time is.

Pingu82 Wed 30-Jan-13 18:27:11

Hi Lozster,

Just wanted to empathise with what you're going through. Also had bad news at first scan last week, after a high nuchal measurement we were told that there's a 30% chance that something is wrong, either chromonally or structurally, with the baby. Combined test brought our odds for DS down a bit but the mw said this was because I had really high Papp a levels so doesn't really mean much in the circumstances (what's the bloody point in the combined test then!)

Have a detailed scan and amnio booked for next weds. Desperately worried about next results and also sad and frustrated as we were so looking forward to telling everyone, buying mat clothes and planning more for the baby, know that stuffs not important in the grand scheme of things but just feel in complete limbo now.

Keep telling myself I have waited a week so can do one more but the uncertainty is agonising and have no idea what we would do if amino brings back bad news.

Really hope all goes well with your amino and you have a happy and healthy rest of your pregnancy.
Xxx

lozster Thu 31-Jan-13 07:50:57

Hi Pingu - I posted yesterday but my reply doesn't seem to be showing? Anyhow, wanted to say good luck for the amnio - here's wishing you patience, strength and a positive outcome.

WipsGlitter Thu 31-Jan-13 18:00:45

Hi Lozster, have you decided if your baby had Downs you will terminate? I didn't have any tests done apart from 12 and 20 week scans. My son was diagnosed with Downs at birth. It was a very, very dark time but I can honestly say he is the light of my life now. He is so happy and friendly, it's not an exaggeration to say everyone loves him. And I think that's such an amazing thing to be able to say.

I know everyone's circumstances are different but having a baby with downs, or any other difference, isn't the end of the world.

lozster Sun 10-Feb-13 17:47:31

Well, tomorrows the day. Thanks everyone who has added their comments and support. It's genuinely a real help.

WipsGlitter Sun 10-Feb-13 17:50:25

Is it the test or a termination tomorrow?

massagegirl Sun 10-Feb-13 18:20:38

Good luck lozster. Fingers crossed for you tomorrow.

lozster Mon 11-Feb-13 16:33:47

All done. Scan before hand didn't seem to show anything. Consultant was very non committal which I can understand at this stage. I did get a slight sense that she felt my questions were irrelevant as I was having the amnio any way. She also asked directly if we plan to terminate. I guess most people are black and white on this. I am undecided but have a very high need to know - I would have this need if i was 1:100 or 1:150.

The process itself was absolutely ok. The 'sharp scratch' was barely sharp and the sensation was like someone sticking their finger in me. All very quick too as I had been led to expect. Heart beat was checked and fine afterwards so am now resting up. Just like my fertility treatment, it's not the mechanics that get you, it's the psychological toll of the stress and anxiety.

Pingu82 Mon 11-Feb-13 20:22:52

Hi Lozster glad all went well today. Sounds really similar to my experience with the consultant being very non-committal and asking directly what our decision would be - we didn't know for definite either way either.
Hoping for good news for you and a speedy response with the results - the stress of waiting is definitely the worst bit!

X

redbobblehat Mon 11-Feb-13 21:47:10

lozster, just wanted to wish you the best of luck. really hope it turns out well for you and your family

Bakingnovice Mon 11-Feb-13 22:10:40

Hope all goes well for you. Fingers firmly crossed.

Elderflowergranita Mon 11-Feb-13 22:47:15

Best of luck Lozster, the waiting's a killer. x

katiecubs Mon 11-Feb-13 23:00:05

Good luck - I really hope you get the all clear x

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