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(11 Posts)
Izzie251 Wed 24-Jun-15 13:18:17

Just had our test for Down syndrome for our twins at 13 weeks and absolutely heartbreaking to hear one is at high risk of Down syndrome. Has anyone got any advice for testing. We do not know what to do. It is soul destroying.

scarednoob Wed 24-Jun-15 13:25:29

you poor thing, that must be unimaginably stressful. I haven't had one myself, but my friend got a 1 in 6 risk and went for amnio - she was fine and said that she just took it easy for a few days.

I think you can research the stats of the doctor who is doing the test for you, that might help a bit. for example, I read on here that prof nicolaides from the FMC has a 100% success rate, ie no miscarriages after the procedure.

thinking of you and wishing you all the very very best with the procedure and the results.

LibrariesGaveUsPower Wed 24-Jun-15 13:30:55

When you say the 'test', what have you had? I know it gets complicated with twins. Was it just the nuchal measurement?

I have had amnio, which is very similar to CVS from the perspective of the patient. Happy to talk about it. smile

What was the risk number they gave you? I was high risk at 1/98. But that meant that I had, give or take, a 99% chance everything was ok. Even if you are given 1/20, that's still a 95% chance it's all ok.

Izzie251 Wed 24-Jun-15 14:13:45

Sorry they have just tested the fluid behind the neck and twin 1 reads 4mm and twin 2 reads 2mm. They mention its high risk if it's over 3.5mm. Sorry this may be cm cannot remember. We have just had the blood tests as well and they have came back inconclusive so cannot give us a numeric figure. We are so confused. Do we get the CVS and risk miscarrying both(as it depends where the needle goes in) or do we send our blood to America for a new test tomorrow which takes 2 weeks.

So scared of loosing both of them.

Izzie251 Wed 24-Jun-15 14:15:40

What's prof nicolaides from the FMC?

LibrariesGaveUsPower Wed 24-Jun-15 14:30:08

What do you mean 'send the blood to America'?

Professor Nicolaides is a leading doctor in this area, he practices out of the Fetal Medicine Centre in London. He is a private doctor, but his success rates are so good that some people choose to go to him.

There is the option of the Harmony test. Again, as far as I know this is only available privately and I am not sure how well it works for twins. It isn't a diagnostic test, but will give far more accurate odds. Most people get a risk something like 1/10,000 from Harmony. If you are interested in this, ask in a specific thread. Lots of people know lots about it.

Is it Harmony you think you are being offered now, or just another go at getting the normal blood tests done?

With CVS, have they explained that they will do it under constant scanning? They don't just stick the needle in.

What would you do if you found out that one twin had Down's syndrome? If termination would never be an option for you, you don't have to have further investigations. Or you can choose to wait and have amnio later on (and after the anomaly scan) so you are prepared for any complications at delivery.

As I mentioned, I've had amnio not CVS, but can talk about that a bit if you want me to.

rallytog1 Wed 24-Jun-15 15:23:00

Can the blood tests be repeated? A high NT measurement doesn't always mean high risk on its own. My dd's was 3.9 but after bloods our risk dropped to 1 in 10000. I'd definitely see if you can get your bloods done again before making bigger decisions about cvs or amnio.

scarednoob Wed 24-Jun-15 15:34:47

it looks as if you can do the blood test with twins, but if you go for harmony, the cost is a little higher:

BadgerFace Wed 24-Jun-15 15:42:49

I would do the Harmony test if you can as it avoids the risk of miscarriage (although it is expensive). I have my 12 week scan next week and intend to do this if the risk factor is high.

Good luck, I know it must be a very stressful time for you.

Cupcakesandlove Wed 24-Jun-15 15:44:41

Hi there,

I have a single pregnancy and I've just had the harmony test today so I am happy to speak with you about it.

They just scan you and take a sample of blood they then extract the baby DNA from it to see if they have an extra cromozone eg 27 not 26. The test results are 1:2 or 1:10000 I paid so much money for the test as I needed to know for my own peace of mind I couldn't of had a normal relaxing pregnancy I would of constantly been worrying. I didn't want to go for the cvs or amino test, I know the results come back quicker but I would rather wait as the test didn't impact what I was going to do if it is bad as I'm having this baby regardless.

FlightofFancy Wed 24-Jun-15 16:28:09

hi, I had a CVS as we had a 1:9 risk for one of the trisomies based on nuchal measurement and bloods. It was done by an incredibly experienced NHS consultant, supported by really lovely specialist midwives. As a PP said, they have a live scan image up at the same time so they know exactly where the needle is going. Some of the risk stats are quite dated, so don't take this in to account. The difference is that the results are 100%, and you know in 3 days. It was slightly painful, and I rested for the rest of the day, but beyond that all was normal. hope that helps x

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