1 in 130 result....waiting for abnomality scan, any advice?

[firefly101]

Hi

Had the quadruple blood test and it gave a 1 in 130 risk of Downs. At FCU we agreed that as this is less than 1% we decided that we would not have the amnio (yet) but wait until abnormality scan to see if any other markers show up. (Hosp have moved scan forward from 22 weeks to 19 weeks)

This was on Monday, have cried all night and most of Tues - had to call in sick and today working from home. Just don't know if this is the best /right decision. Any advice from anyone who's been there would be great, (this is my 1st pregnancy so it really in the dark).

Thanks x

Oh firefly, I'm so sorry to hear you're having to go through this. I had a very high risk result (1 in 2 for both T 21 and T 18) unfortunately after a CVS discovered baby had T18 and we terminated.

Just remember that in you have a 129 in 130 chance of your baby being absolutely fine, which in betting odds are fantastic, you probably wouldn't bet against it. I know it's hard but if you feel like you've made the wrong decision in a few days or weeks you can always change your mind. Even if you feel you just need to know, not that you would terminate either way.

It may be worth giving ARC a call, I never spoke to them but a lot of ladies on here have and have always said how fantastic they are. Their number is 020 7631 0285.

The only other thing I can think of is that it may be worth you calling the FMC on Harley Street and arranging for bloods and indepth scan to be done there. They really seem to be the experts in feotal scaning, it was where I went, and I think bloods plus scan cost £150. It should you give you a much more accurate risk factor. Just a thought.

Wishing you lots and luck and strength to get through the coming weeks and months.

Thank you for your reply, I'm so sorry to hear your sad experience.

Our midwife called us on Sunday morning and we were in hospital on Monday, so it all happened so quickly and (given that it can take a week to get docs appt where we are) it seemed to be that they were worried (although I suppose I would also be annoyed if it had taken longer).

I keep telling myself we have a good chance - with the risk of m/c from amnio for our hosp is so similar to my risk of the baby having Downs, I just don't know what to think. Hence waiting for a scan to see if we get anymore information - will certainly get in touch with the FMC and ARC. Already feel a tiny bit better for having a bit of a plan.

I had my scan yesterday and had a bad result. Ours was 1/32 for T21 and 1/5 for T18. We had the CVS there and then. But sadly because the risk was so much higher the decision was much easier to make. However, I can only imagine how much stress and pain you must be feeling. Having the possibility there and not knowing is so upsetting.

But as HelenLouisey says, your odds of NOT having a baby with Downs are so much higher than having one with Downs.

It doesn't sound like you had the Nucal scan done - if you are less than 14 weeks then the FMC would be able to do that for you, and the bloods (what HelenLouisey was talking about). They would check for other markers (nucal fold, nasal bone etc). It is run by the Professor who developed the Nucal Fold tests. You could perhaps consider the amnio/CVS there too, although I did check their prices and they are expensive.

Some very presumptious advice, but I would say see how you are dealing with the waiting. It is such an emotional rollercoaster, and perhaps it will get easier to think about those 129 chances it won't be you. But if not, the advantage of having the tests done is then you know, and you can hopefully get back to enjoying your pregnancy.

Sending massive hugs and I have my fingers crossed your news is good.

Thank you Allyfe, so sorry to hear your news, keeping my fingers crossed for a good result for you.

I'm 17 weeks and we weren't offered a Nucal scan by our midwife. We were offered the quadruple blood test at 16 weeks, so 17 weeks now and can't have abnormality scan until 19 weeks, which I know isn't conclusive, but with a less than 1% risk and a good scan I think I'd be happy to go ahead.

I'm scared of loosing a healthy baby due to amnio, although know this is rare too. Am also worried if I wait until a scan at 19 weeks and its bad news I'll want an amnio then if that's bad news and we do decide to terminate (still no idea what we would do) I will be getting closer to the 24 week limit set by our hospital. A lot of ifs I know!

Our hospital have said to call / go back at any time, so I'll take your advice and sit tight for now.