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Likely to be high risk for Downs after 12 week scan. Desperate for some advice and experiences.

(18 Posts)
Sahkoora Tue 15-Apr-14 07:46:13

Had my 12 week scan yesterday and was told I was likely to end up with a high risk for Downs. Nuchal measurement was just over the cut off at 3.6, but I am 36 so it would probably push my chances up, depending on bloods, which I will get in a couple of days.

DH and I talked and decided if we get a high risk of any sort we will go for amnio/CVS. We will have to go to London for this.

Please can anyone give me some advice and experiences? Which of the tests should we choose? Anyone had a similar nuchal measurement? They said even if Downs wasn't an issue they would need to do extra scans to look at baby's heart.

Thanks.

mssleepyhead Tue 15-Apr-14 07:55:22

I'm sorry to hear you're going through this worry.

I haven't got experience myself but we agreed that if we'd got a positive Nuchal fold test we were going to go and have a Harmony test at The Fetal Medicine Centre in London. It's expensive but non-invasive so doesn't carry the same miscarriage risk. www.fetalmedicine.com/harmony-test

It may be worth you looking in to.

I had a scan there myself at 11 weeks for another problem and highly recommend them; they were professional and kind.

Sahkoora Tue 15-Apr-14 08:08:29

Thank you. Our hospital told us about the Harmony test but at £600 it's not something we can afford to consider.

I have heard good things about the Fetal Medicine Centre, think I will look into them.

Thanks.

LoveBeingCantThinkOfAName Tue 15-Apr-14 08:15:38

It's a shock isn't it. I turned out to be too late for the scan to show anything but had very high rush showing from the blood test. I had an amnio and the fish test. This is a 100% result in 24 hours.

I felt confident in the person who did it as he had amazing stats on this procedure.

The main thing is to consider not just whether to have the amnio or other testing but also what would you do with the results, why do you want to test. If it were just to know you can wait till later when the risk has reduced.

There are loads of thread where people have been tgrough the same and I certainly found them useful. Defo got a full picture from all sides.

Best wishes x

Plateofcrumbs Tue 15-Apr-14 08:33:53

It sounds like your results were very similar to mine, I'm the same age too.

I actually ended up having harmony AND cvs - the hospital I was at (Kings) is trialling harmony so we got it on the NHS. I think there is one other hospital in London doing the same. Worth asking about if you're having to be referred to a London hospital.

We has the CVS as well as we were also high risk for another abnormality which isn't picked up by Harmony. They initially couldn't perform the CVS (positioning of all various internal hits and pieces wasn't right) but we went back for another try and in the end it was very straightforward.

We also had a cardiac scan at 20 weeks.

It was all very stressful so I don't envy you going through it, but everything has turned out OK for us.

Good luck - chances are high that everything will be fine! thanks

GingerRodgers Tue 15-Apr-14 08:46:56

Sorry to hear you're going through this op.
Some places don't do an amnio until 15 weeks so it might be cvs if you can't wait?
Agree with pp, what would you do with any results that showed abnormalities? I think that determines how much testing you should go for.
Also, it could still very likely be nothing so try not to get too worried yet.

Plateofcrumbs Tue 15-Apr-14 09:10:51

Just to add to previous post as it wasn't clear - the only reason we had both Harmony and the CVS was because of the initially uncertainty about being able to perform the CVS on me, so we thought we may as well get the Harmony in the meantime. There would normally not be any benefit in having both.

And we opted for CVS rather than amnio simply because they can do it earlier and the idea of waiting an extra few weeks was agony. I was also keen to get results as early as possible as if we'd ended up in a position where we opted to have a termination, I would have wanted that as early as possible. I don't think the risks between CVS and amnio are substantially different.

Sahkoora Tue 15-Apr-14 09:13:08

I think we would terminate if we got a positive result. Our DS1 has ASD and as a family I don't think we could survive two disabled kids.

I hate myself for saying that, but I really don't think we'd cope.

NatalHypnotherapy Tue 15-Apr-14 09:15:02

Have you been in contact with Antenatal Resuts and Choices? They are a national charity that can provide further information and support.

Their website is www.arc-uk.org

Sahkoora Tue 15-Apr-14 10:30:07

Thanks. I've emailed the Fetal Medicine Center about the possibility of another scan, bit more doable than the Harmony moneywise.

But I'm 13+2 today so I doubt it will be possible. Been reading lots of positive stories on here so not getting too dejected.

Just had a horrible year with DS1 being kicked out of school because of his autism and this pregnancy was something exciting and a good new start for us. Just would like to stop worrying for a while!

Sahkoora Thu 17-Apr-14 10:22:37

Hi, got my bloods back yesterday and I have 1:34 chance. Not horrendous odds but not great. With the bank holiday, it's looking like I will not be able to have a CVS, but will have to wait until at least 30th for an amnio.

Plateofcrumbs Thu 17-Apr-14 11:27:53

Oh that is so frustrating - are you sure you'll have to wait for the amino? I can't remember when they did my CVS but I was given some time to think about it and no-one mentioned a cut-off date to me.

Good luck - the odds are still heavily in your side but I know the wait for results is excruciating thanks

Sahkoora Thu 17-Apr-14 12:31:27

Thank you. Yes, very frustrating, wish I'd had my 12 week scan at 12 weeks and then we could have had more time to play with.

The doctor at UCH would prefer to do an amnio apparently as the risk is smaller. But everything I've read leads me to believe the difference is negligible. I need this to be over, I need to know one way or the other.

Have a holiday booked on 9th May and I know it seems trivial but I don't want to go away with all this worry.

Plateofcrumbs Thu 17-Apr-14 13:43:32

Yes as I understand it the overall risks aren't greatly different but it is influenced by the skill of the person carrying it out, so I might be swayed by the fact the doctor would prefer to do an amnio, they might have a greater specialism in amnios at UCH.

I've just checked back on how long I waited between my CVS and the results for Downs and it was only 3 days (the full screening took a couple of weeks). I don't know if that is typical but hopefully you can get results before your holiday if you have the test around the 30th and you'll be able to have a relaxing time and put the whole thing behind you.

Really feeling for you as I know it is horrid.

Sahkoora Fri 18-Apr-14 10:58:23

Thank you. I have managed to get an appointment for a CVS at a different hospital on Tuesday. Not waiting is a weight off my mind, if the results come back as quickly as yours did, I should know by this time next week.

In the end my results came back at 1:34, not horrendous, but not enough to take a chance on.

A little nervous about the procedure itself, have read varying reports about how much it hurts and how people feel afterwards. I have an anterior placenta so hopefully that means they won't have to dig around too much with the needle.

Poshsausage Fri 18-Apr-14 17:11:08

I had a cvs recently and the procedure was ok I think adrenalin sees you through and the doctors are so professional they do them every day , I felt out of my depth with all the information and worry but the professionals took over and we totally trusted in their expertise and advice . We had to tfmr even before we had the cvs results back but as it was twins we decided not to risk losing them both and it was absolutely the right decision and the cvs came back with severe abnormalities in any case on top of the heart problems and hydrops

BogeyNights Fri 18-Apr-14 17:25:25

Sahkoora, I had a similar result for a blood test at 16 weeks for my second child. I was 35 years old. It's a slap in the face.

I was offered an amnio by the hospital which I took, and there was a week's wait as there was blood in the sample taken, so they couldn't get the result in 24 hours as we had hoped. It was a hard week waiting for the result. Really hard and I was in tears a lot worrying about a positive result and what we that would mean (we were almost definitely going to make the same decision as you mentioned). Then the next moment worrying about the possible miscarriage due to the amnio. Neither scenario was in my mind when I weed on the stick and got a blue line....

My result came back negative for Downs. We were relieved. I wish you all the best for the coming days, but there is nothing anyone can say to you to make it any more bearable.

It's not fun but you must also remember that there is a 33:34 chance that the result will be negative for Downs.

Plateofcrumbs Sat 19-Apr-14 08:15:13

That's great you've got in for a CVS. In terms of what it was like: for me physically it felt a bit weird/uncomfortable but not really painful as such. I was paranoid about staying still if there was a sudden 'jab' of pain, but it was fine. Afterwards I felt a little bit bruised/sore for a couple of days but nothing that stopped me doing normal activities.

It was kind of horrible but only really because of the associated stress/worry (including worrying it would be painful!), not because of the actual physical experience of the procedure itself, if you see what I mean?

Keeping my fingers crossed for you.

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