NT Scan, Bloods put me at 1:8 risk of downs!!

[girlfromdownsouth]

Hi All,

Hospital called me this morning (not a good sign when they call you!) to say that my adjusted risk of downs is 1:38 after NT scan, but the Biochemistry result (Bloods) was actually 1:8. I am in absolute bits as after the NT scan the risk was 1:611 so they obviously have picked something significant in the bloods. I am 39.5 yrs old and otherwise perfectly healthy.

I am coming up to 13 wks, so can choose to wait till 15 wks for amnio, or I can do the CVS now. My hospital don't do CVS so they will refer me to another NHS hospital (about 3 hrs away) or I can pay to go private (as we did with the NT scan). I read it takes about 2/3 weeks for the results of the CVS which kind of defeats the object of not waiting. Does anyone know if the results can be got quicker. Obviously I would like to know asap.

Please don't judge me but there is no way we can have a child with downs which is the reason we had the NT scan in the first place.

Any advice/help would be welcome. Obviously this has knocked us for six because we were quite confident all would be OK because of the the scan results. Thanks for reading.

Now you will need to check 'initials' out as I may be remembering them wrong. 'FISH' or something similar. I have had cvs and got the results with this method in 48 hours. My risk was 1 in 4 and because of that I got the fast results free. I think you would with 1 in 8 unless hospital policies vary. Ring your hospital and try and find out their policy. I really do feel for you. I will not judge. xx

I can't advise you, but I wish you the best with whatever you decide and the ensuing results.

I am am 39 as well and went through the same thought process of whether I could cope.

Really difficult.

(hug)

I would absolutely and wholeheartedly recommend Prof Nicolaides: www.fetalmedicine.com/fmc/

I had a CVS with him 6 years ago and got the results back within 48 hours.

For the record, his nurse told us that he had never lost a baby through miscarriage after the CVS. This may have changed, it was 6 years ago, but just to show that a lot of it is down to the skill of the person doing the procedure.

MommyMayhem, I would love to go to Prof Nicolaides but I live in Wales so would be a helluva trek. I have family in London so it is do-able but would have to take hubby and 2 kids for the trip. (DD and DS do not know I am pregnant yet)

OffToNarnia, thank you will look up FISH, the hospital they will refer me to is The Heath in Cardiff. Will check with them. Am sure if I go private results will be quicker.

Darlingdamsel, thanks so much for your kind words.

The problem is I have wanted another one for about 4 yrs but situation was not possible and can't help feeling this is my last chance which is why I am feeling so shattered by this news.

If you are sure you would not proceed with the pregnancy it is probably best to find out as soon as possible. I just had a CVS at 15 weeks and didn't wait any longer as I was advised my the midwife at my hospital that from 16 weeks if you terminate you still have to delivery the baby as it were. Before 16 weeks the termination is less complicated/traumatic (not emotionally obviously but physically). I was told at my NHS hospital that my CVS results would come back in 5 days but actually they rang me 2 days later (and thankfully I got the all clear). Good luck and I really hope you get the all clear too. 1 in 8 sounds terrifying but the odds are still in your favour.

Just to add I was also told that the risks with CVS and amnio are now the same (despite what you will read on the internet) so no point waiting for that reason alone.

Hi itisntreallyme, OH and I are absolutely certain we would not proceed with the pregnancy so I do feel I would like to know asap. I did not know that the CVS and amnio risks were the same now - thanks so much for telling me because that does make me feel better.

I had a m/c at 12 weeks before my first child and was worrying about how difficult a termination would be further along the pregnancy.

I am soo happy for your results - that's fantastic! 1 in 8 is really scaring me and I just need to know for sure.

Hopefully all will go well for you. Just to let you know I had a healthy baby in my 40s..so 39.5 not so old in my humble opinion.. I know nothing going to make you feel ok when you are going through such a worrying time though. I think for your sanity you should choose which method gives the quickest results. If you can afford to pay privately and if it stops you from having a 3hour journey then maybe that is the way forward. Hope you get some useful information re appointments from the hospital soon.

Thanks!

In that case I would definitely ring your NHS hospital, check their risk rate for CVS and amnio, find out how soon they can book you in and how long results will take (I'd be amazed if they take 2-3 weeks). And if you're not happy then see what private options there are.

Good luck again

Hello. I had a 1:4 risk from my bloods and a combined risk of 1:20. I am 37. I had a CVS which gave the all-clear which was obviously a huge relief. So please feel reassured that bad blood work does not necessarily mean there is a problem with the baby. As my case shows, quite the opposite in fact. What was your NT measurement?

Personally I would pay to have a CVS privately. Money definitely talks in these situations both with speed of appointment and results. The preliminary results are usually back within 48 hours which rule out the 3 main trisomies (Down's, Edward's, Patau). The longer results take 2 weeks and there is no way of speeding those up as they have to grow stuff from the sample IYSWIM.

The sooner you have the CVS the sooner the results process is commenced which can only be good. I remember really wanting to do anything I could which was pro-active rather than just sitting around waiting. It's the waiting that's the hard bit!

Let us know how you get on with appts etc.

Just wanted to reiterate the advice that you have been given and let you know how sorry I am that you are going through this.

I have had two CVS's. Both times the initial results came back after 48 hours - it can't be any quicker than this because the sample that is taken needs to be grown in the lab. The full results take up to two weeks, again this is because of teh amount of work that needs to be done.

Both the CVS and amnio have similar waits so if you had the CVS now you would be better off if it is bad news in terms of ending the pregnancy as you can have a surgical termination.

When could the NHS hospital offer you an appointment? Bear in mind that if you have the test done on Thursday or Friday (and possibly Wed) you are not going to get the results until after the weekend.

Good Luck.

Hi there, I'm new to Mumsnet but just spotted your post. I had a CVS in november at Birmingham womens. I self referred simply because of my age (did not have an NT scan beforehand). Stupidly I just thought the test would give me reassurance that all was ok. I had it done on a Tuesday morning and my result was back Friday afternoon. Unfortunately my baby had downs and I proceeded with a termination. The last few weeks have been dreadful but I know with absolute certainty that it was the right thing for me and my family. There are a few points I want to make and I am coming at this from the perspective of having recently been through it and also I am in the 'industry'. Firstly, my local hospital did not offer CVS so I went to the regional centre, by doing this, its almost a given that the person doing the procedure is highly skilled and has lots of experience - the professor who did mine had been doing them for 17 years - this may not be the case in private practice. Secondly, the view that money gets you a better service, is, in my view, not true. The fact is that most private practices will be sending their samples to the regional centre anyway, so you will only wait as long as you would through the NHS. Thirdly, your result is split in to two parts, the first part is available after about 2-4 days and the full karotype in 2 weeks. I was told without doubt that if the preliminary result showed an abnormality you could certainly act upon these results. If you are having a CVS, you should have it done soon (I think the cut off is 14 weeks) and then you would have to wait for an amnio. Anyway, despite my story, the fact is that the odds are on your side, 1 in 8 means that 7 are ok, so keep that in your mind. I hope it all goes well for you and if you need any more info about the procedure or afterwards, let me know. Ang

Hi All,
Thanks so much for your posts. My midwife just called and she has managed to get me referred to Cardiff Heath Hospital (3 hrs away) as they don't do CVS here. The appointment is Monday at 12:00 so not too long to wait (and worry).

My midwife checked for me (she is brilliant!) and says that the people doing the CVS at the Heath are the same ones who private work for Dr Beattie at Cardiff Spires where I had the NT scan done and the results will be "done" at the NHS Hospital anyway which is reassuring.

AngieM2 - my heart goes out to you. In your position I will be doing exactly the same thing.

I will let you know how I get on.

Sorry to hear you are in this situation. I had almost identical results - the NT alone gave me a fantastic low risk, then the bloodwork came back "terrible" in the words of the doctor, leaving me with 1 in 34 overall.

Unlike you (no judgement here, promise) we wouldn't terminate for Down syndrome so we did not do the invasive testing. There were other reasons too related to other pregnancy complications etc I have but I won't bore you with those!

I'm 23 weeks now and still "waiting it out" - I will have an amnio at 30 weeks so we have an answer without risking the baby as we don't want the issue to overshadow the delivery day.

However, because I've spent the last 10 weeks wondering, I just wanted to share with you some of the things I have found out.

Firstly it does seem that poor blood results result in "false" positives far more often than a thick nuchal fold. That's anecdotal evidence incidentally, not medical fact unfortunately!

Secondly, there can be a number of reasons for bad blood results. For instance if you have had bleeding in pregnancy, as I did, your PAPP-A is likely to be lower (low PAPP-A is a T21 marker) Similarly if you had IVF, or twins or indeed some women just naturally have high levels of HCG, like me, then your free bHCG (the other hormone they test) is likely to be higher than average which is the other marker.

And sometimes people have odd blood results for no other reason than they are odd.. or rather doctors cannot determine the reason why and it's harmless.

If your PAPP-A is particularly low (I think under 0.35MoM) you have a small - 1 in 20 I was told - risk of IUGR or pre-eclampsia later in the pregnancy so you will get an extra growth scan at 30 weeks or so. I suspect yours is judging from the ratio you have!

As others have suggested, in your situation CVS does seem like the best way forward. Not just because an earlier termination is easier, but believe me, waiting is NOT a fun game at all so the sooner you know the better!

Good luck with it all, and I really hope you get a great, clear result - let us know! (as you can guess I'm curious too given my odds are similar!!)

Just another thought from my own experience. I was in the same situation as you, although 1:2 risk so really the outcome was just about as inevitable as it could be!

Before you take a 3 hr drive for your CVS it may be worth asking your midwife if they can scan you to make sure the placenta is in the right place. I was booked in for CVS but they couldn't do it as (if I remember rightly) my placenta was at the back so they couldn't get at it, so I then had to wait for Amnio.

Like I say, it's just a thought - I know I was a mess on the day of the CVS and you've got a 3 hour drive on top of all that worry.

And yes as others have said, they should ask for 'FISH' so the initial results are fast tracked, in fact we knew the next day.

I really, really hope that all works out okay for you - I'll be keeping everything crossed.

Sparklies - that is interesting what you say about "bad" blood results if you have bleeding in pregnancy - I was admitted twice for bleeding at 8 weeks to EPU and at 10 weekes to Casualty!! FYI my PAPP-A was 0.382MoM.
I will let you know how I get on. I will have the initial results by Wed/Thurs next week.

Debs3013 - I have had 2 previous scans (see above) so am assuming my placenta is in the right place, or am I being naive?

They just need to make sure that the placenta is accessible to be able to get the needle in safely. It probably isn't something that they have paid any attention to in the last two scans so it might be worth a check with the midwife.

I had a 1 in 2 probability from terrible bloods and nuchal and the cvs was clear so there is always hope.

Just wanted to add something in light of Angies post: There is no cut off for the CVS, although they are not generally carried out once it would be possible to do an amnio (I believe beacuse the remit of an is woder - it also tests for neural tube defects unlike the CVS)

I had my first CVS (with my DC3) at 21 weeks.

I'd agree with with Bub, they wouldn't be looking at where the placenta was lying at your previous scans, so it's worth getting it checked if poss.

Also again what Bub said, she is proof that there's always hope - we both had the same risk and she was fine (I am genuinely very pleased for you Bub ) so try to hang on to that. If your nuchal fold measurement was okay (which it sounds like it was) and it's just your bloods knocking it back, you've got a lot more cause for hope.

Thanks Debs, for ages after the results it really upset me to think that because we had a clear result it meant that the 'other person' with the same probability would not have. It also took me a while afterwards to reconnect with the baby as I had emotionally cut myself off from it whilst waiting for the results.

Girlfromdownsouth, we're here if you need to talk while you're waiting - it's a horrible horrible time.

I know what you mean about emotional detachment Bub but you know, I really believe some kind of sixth sense told me from the beginning that something was wrong.

I was initially really over the moon to be expecting (first pregnancy) but after the initial high, I started to have real issues with it. I couldn't read baby books or mags, my hubby hit a brick wall whenever he tried to talk to me about baby gadgets or anything - I remember he bought me the 'What to Expect' book and I couldn't even pick it up.

Of course it didn't make it any easier when the time came but I do believe nature or whatever was trying to give me a bit of an emotional helping hand.

I'm expecting again now and I feel completely different - of course there's some fear but I am totally calm. Been reading all my mags, thinking about names, not having the usual worries about money etc. It's still early days but I just have a feeling all is okay (still keeping everything crossed of course!)

Never feel bad about it Bub, whatever the odds, someone has to be the one and what's meant to be will be.

Just want to wish you luck, OP

Just a quick update: I have not long got home from my local hospital as I had another episode of bleeding last night - 3rd time(the stress of receiving the results??). Thankfully the scan showed everything was OK and it was lovely to see baby clearly on the screen. Got a different doc from the last two times (had a very horrible woman doc with zero bedside manner) and he took his time and even counted the fingers, legs arms etc.

While I was there I explained I was having the CVS on Monday and asked him to check the placenta which he did, and apparently it was fine. He even took copies of the notes I got from the private hospital re the NT scan.

Sparklies - going back to what you said about raised hormone levels in the blood - when I had my m/c I had to keep going back to the blood clinic as the hormone levels in my blood were still very high after the m/c. I think I had to go in an extra 3 times before they were happy that the levels had come down. Maybe I am one of those with high hormone levels? Clutching at straws I know, but that's all I got at the moment.

So now it is just a case of waiting for Monday and then for the results on Wed/Thurs.

Thanks to all of you for your support.

Oh and I wanted to say also that I have felt myself emotionally detatching from this pg until I know what's going on, but seeing baby on the ultrasound really helped me bond again.

Hi, I've had a similar experience to you. My 12 week scan showed a nuchal fold of 1.2mm (prob. can't get much better!), but the bloods showed a really low PAPP-A, just like you, so that put the adjusted risk high. I too, had bleeding in the early weeks so I now wonder if that had something to do with it all.

When you go for your CVS, they'll do a really detailed scan beforehand and check for some markers - at mine, they looked for a specific stomach valve and another in the heart. I asked about the nasal bone and was told it "wasn't really relevant", but they checked anyway and it was present. I got the distinct feeling that they knew just from the scan that there weren't any problems, and in fact they only asked for the quick results, which took 3 days.

This was all at Queen Charlotte's and apparently there's a prof there doing a study on low PAPP-A/high risk DS results.

I'm 21 weeks now and all is fine. The CVS wasn't the most fun experience of my life, I have to say, but the people will (hopefully) be very kind.

TWO TIPS FOR THE DAY:

1. If you cross your arms over your boobs while they do the test, you won't see the needle. You can watch on the ultrasound screen while they do the test and see how far away the needle is from the baby (they went in at the baby's feet end for mine).
2. Take some food just in case you feel in any way faint afterwards.

Well, if you're clutching at straws, I am too! - it helps keep us that little bit more sane! Your theory is not unreasonable - although they never follow me down to zero with my miscarriages, I know I take a lot longer than most as I still wee on eBay cheapie pregnancy sticks to have an idea of what is going on and take a long while to ovulate again compared to others. And my bHCG is higher than average. For what it's worth, I was told that if my bHCG (1.73MoM) was 1.0MoM (i.e. that was normal for me so it didn't count as a marker) my odds would have been 1 in 1645.. quite a difference despite my low PAPP-A (0.29MoM in my case).

Sorry to hear about the new bleed. Have they given any reason for it? Do you have a subchorionic haematoma as that's a common reason? I have pretty much unexplained bleeding in my first trimester with every pregnancy which has been put down to hormonal imbalances as I have irregular cycles anyway. It comes and goes, but is usually gone by 12-13 weeks, never to return thankfully.

I'm very hopeful all will be fine and this time next week you will be celebrating!