combined test 1:198 for Downs

[CoffeeCoffeeAndLotsOfIt]

Hi all

Had my 12 week scan today and I've been given a risk of 1:198 for downs.

This is a lot higher than my first pregnancy, so it's concerned me. I'm 36.

I was wondering what risk other people have been given, and what the outcome was?

I'm considering paying to have a harmony test, rather than have a cvs.

Whilst I wouldn't necessarily have a termination, I would like to be prepared if we're expecting a baby with downs.

Thanks all

[lovelilies]

I got 1:200 risk with DS.
Had a CVS
All okay, DS just turned 2. Now pg with dc3 and test was 1:11000.. So not having any other testing, although if risk was as high as before, I'd pay for harmony rather than CVS

Good luck

[PacificDogwod]

If you had 198 children one would be affected by DS, 197 would not.

It is a risk, not a verdict.

If you want certainty consider invasive tests such as CVS or amnio.

[PacificDogwod]

Oh, I forgot, I had a 1:4 risk for trisomie 13 and 14 and had CVS x3 and amnio x1 in my 4 successful pregnancy. All was well

Good luck.

[DrSausagedog]

With DD it was 1 in 240, which worried me a bit. I know a last who got 1 in 24 and chose to have the CVS, all was fine.

Maybe the harmony test is a good idea if you're worried.

[Artioo2]

I had a 1 in 39 chance. Had CVS and it was fine. The risks for CVS are apparently smaller than is reported. I read that the stats the risks are taken from are from not long after the procedure was introduced, but doctors have got a lot better at the proceedure since then and the scanning equipment they use to guide them has got better. That's why we opted for it. That said, with your much lower risk factor, I'd probably go for the Harmony instead.

[ChewyGiraffe]

I got 1:50 from NHS scan, then 1:625 from a private scan done alongside Harmony test. Harmony test came out as 1:10,000, so I gladly decided to avoid any further testing due to the miscarriage risk with CVS/Amnio. I was told that MC risk was 'only' 1:100 for amnio, but that still seemed high to me. Like you perhaps, I hadn't decided what I would have done with adverse results, but thankfully I never had to work that through. DD was born perfectly healthy.

I remember a discussion with a consultant who said if keeping pregnancy regardless of test outcome, could still be valuable to know whether baby had downs to enable best preparations for post-birth care. E.g. might have cardiac scans to help plan medical team to attend birth, or provide treatment shortly afterwards (neo-natal cardiologist, or whatever).

[ilovevenice]

Talk to ARC (ante-natal Redults and Choices.
www.arc-uk.org
(I'm not great at links so hope that works)
They have a brilliant helpline that helped talk me through the options when we had a similar result (this was pre Harmony, so we chose to avoid invasive tests as ultimately it was still a low risk result and he is fine). They are very knowledgable and also kind.

[ilovevenice]

Ante-Natal Results.
Grrrr auto correct...

[CoffeeCoffeeAndLotsOfIt]

Thanks for your replies everyone.

I've booked myself in for a harmony test next Thursday. If the results from that aren't v good, I'll look at amniocentesis (by the time I get harmony results back I'll be too late for cvs anyway).

[Bejeena]

Mine were 1:125 I think a lot higher than my first pregnancy, I am 37 and really the age is worked out in the calculation which is why it was so high. I declined the amniotic as have previously had miscarriage but had the NIPT blood test from prenatal instead, not sure if this is same as harmony.

I would be confident it is just due to age and they would be able to see anything peculiar on the scan.

Good luck

[novemberchild]

I'm 38 and also considering the Harmony test. But it bothers me that it is screening rather than diagnostic - does anyone think it is worth it? I was going to ask for amnio otherwise - I would really need to know about any abnormalities and am quite anxious about it.

[newyorkminute]

I had a risk of 1:600 with DS2 and he has downs. The one thing I would change would be having advance knowledge; it was like being hit by a sledgehammer - the last thing you need after just giving birth. I'm currently pregnant with DS3 and had the harmony test. I could not recommend it more if you are nervous about invasive testing on the NHS. Incidentally, T21 is by no means a disaster. DS2 is a joy and adored by literally everyone he meets!

[StrawberryMouse]

Thoughts with you, such an anxious time. I had a similar result to you on my second pregnancy at only 27 which I followed up with a private quad test which came back 1:13.

Scans showed no obvious abnormalities both times but the blood results were unusual for my age, no family history and a previous pregnancy with very different odds so after speaking to a consultant we eventually decided on an amnio which confirmed that dc2 did not have Down's syndrome.

Take advice from as many people as possible - I spoke to ARC myself and they were very informative but ultimately this is your body, your pregnancy and your family and only you can make the choice of whether to undergo further testing or not.

[KittyandTeal]

If you do not need it to be totally diagnostic I would definitely have a harmony.

They are very accurate for Down's syndrome. If it comes back high risk we wee told it's pretty ,inch certain that the baby is affected.

Arc are brilliant, they will be able to answer so many questions you have.

💐

[Jw35]

I opted out of the downs testing for this reason it's just not conclusive enough! Chances are your baby won't have ds with those odds

[CoffeeCoffeeAndLotsOfIt]

Just found my original thread to provide an update to anyone still around.

Harmony risk came back as less than 1 in 10,000. Realise it's not conclusive, but 99% is good enough for us