High screening result

[Samk79]

Hello,
Had my dating scan and bloods on Monday. Had a call today saying that there is a 1 in 104 risk of Down's syndrome which is classes as high risk. We saw the screening midwife and have opted for diagnostic testing.
I'm worried sick, I am 40 so knew the risks but hoped it would be okay.
When I was pg with my son he was 1 in 120 risk and was fine so I know it can be okay but worried given my age 😞

Good luck, I've been there except our chance was 1 in 13!! 😱 I'm also 40 at EDD. We opted for NIPT which came back as 'highly unlikely'. It's not diagnostic but was enough for us. I think if I could turn back time I'd opt for diagnostic testing now for peace of mind, especially as anxiety is through the roof because of coronsvirus. Good luck with it, am sure all is fine x

I dont have personal experience of this but dont want your post to go unanswered amid the coronavirus mayhem!

I just had a look online and the average risk for a lady of your age is 1 in 100 - so if you look at it like that, your result is slightly better than average! I think they take age into account when calculating the result, so that will have pushed it up too.

1 in 104 is less than 1% - so more than 99% that everything will be fine congrats and good luck

Hi @samk79!
Did they explain to you fully why your results came back this high? It's a combined test and includes so many factors, one big one is your age. And at 40 we all know the risk is higher, so it's in theory more likely but doesn't mean anything yet. 1 in 104 is still a good chance, meaning less than 1%. Did they give you any other information like NT measurement or hormone levels? Have they offered more tests? I personally would start with a NIPT / Harmony Test which is offered but some (few) hospitals but can be booked privately for around £400. It's a test that checks your baby's DNA in your blood and although the test says it checks the three main Trisomies it's actually only highly reliable for T21, Down Syndrome. It's not a good little tool for your peace of mind and to rule DS out. However it is not diagnostic and should in the very worst case the result come back positive for DS and you were to decide to TFMR you might need a CVS or Amnio to confirm.
Looking at your result I personally would have a lot of hope, the chance is less than 1%. To put it a little into perspective - mine came back 1/40 at 33yo, hormones were nowhere near where they should be. And yes, it was DS. Maybe call your midwife back if she hasn't discussed options. 🤞🏼 I truly believe you'll be fine!

Thanks ladies @NoCallerID
The midwife went through all the options with us. She did say we could go for private testing ie the nipt but we can't afford to spend that at the min, my husband is self employed and we don't know what is going to happen with his work.
She did go through all the levels which I didn't really understand. At least with the diagnostic tests we will know for sure.
If you don't mind me asking, did you go ahead with your pregnancy? X

I understand that. It is a lot of of money.
No, our little boy had physical abnormalities too, his intestines were growing on the outside. We didn't know at this point but professionals prepared us that there could be more issues with his heart and lungs. We have taken everything into consideration, done a ton of research on the internet and decided it was best for our baby, our toddler and ourselves to let him go. This is not even three weeks ago, but we know we've made the right decision. Please do let us know how you get on if you decide to do further testing.

That sounds sensible. I know some trusts offer NIPT for free as a second screener but understand that that isn't possible for you at the moment. I was reassured despite my incredibly high chance, that the nuchal measurement was within normal range, but that my bloods were out (but not massively!) . Yours must have been quite good as your chance is so much lower than mine. I think our age influences the risk factor massively. For what it's worth I wish now I saved my £400 and had the amnio instead. My mind is very much focused on false negatives and the 'what if there's something else' (although nothing has shown up on any scans). I would have had complete peace of mind if I'd gone for amnio instead.

@NoCallerID so sorry, it must have been so traumatic for you. We have opted for diagnostic testing and waiting to get an appointment for it
@Liveforholidays I know when you look at it the odds aren't that high, at least with the diagnostic tests we will
Know for sure!

I am quite sceptical about the combined test, especially for us oldies. If anything is even slightly out it pushes up the risk massively! For what it's worth my friend had normal nuchal, normal bloods and was 39 at delivery. She had a 'Low risk' result... 1 in 400 and something and her baby has down syndrome. That tells me that the combined test is not an exact science. At least you'll know for certain soon. 😊

@Liveforholidays I agree, we get a high result purely on our age even before any testing is done. It is purely a screening test and the midwife was quite clear about that. For us the amniocentesis is the right way to go as at least then we will
Know for definite, will be a long couple of weeks though!

Hi. I would check other local hospitals as we live on the border of 3 counties and it was just luck that the hospital does NIPT for free if combined is high. But the hospital which is closer to us doesn’t. I opted for the hospital as my son was born there. So have a look if you can switch hospitals.

Just had a cvs as NT 4.5, combined 1:2 for downs and high chance NIPT.

Hubby wants terminate if Downs but I don’t as I’m 41 and this was unplanned and maybe my last roll of the dice.

@welshmercury good luck, how long until you get your results?
I had my amniocentesis Tuesday and got the results back yesterday, thankfully it was all clear.
I'm really not sure what we would have done if it wasn't. Thinking of you x

@welshmercury bumping for other MNers that have experience and sending you

@Samk79
Thanks

Results Tuesday hopefully if lab not too busy with everything going on at mo.

I have a tiny flame of hope that will all be ok.

@welshmercury everything crossed for you, the waiting for results is awful x