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Borderline risk for Downs, WWYD

(13 Posts)
sunshinesue Fri 20-Jan-17 11:23:34

The combined screening has come back with a 1 in 182 risk for Downs. As this is defined as low risk obviously the NHS won't offer any further investigation.

Whilst I'm happy to be low risk it's does seem awfully close to the 1 in 150 cut off.

I keep talking myself around in circles about paying for private NIPT. Whilst we do have the money for this it's a big chunk of cash for us. I swing from telling myself 1 in 182 isn't far off my age related odds anyway ( I'm 36) and chances are everything would be fine to thinking knowing my luck I'll be that 1 ( multiple miscarriages in the past and my only DC was prem) and I should just take the test and know one way or the other.

Sonographer said all looked good at the scan so I guess it was the bloods that's affecting things?

I know only we can make decision (Dh leaving it "up to me" which doesn't help) but any thoughts welcome. Thanks for reading my ramblings....

SoleBizzz Fri 20-Jan-17 11:25:39

As a Mother of a severely disabled chikd I would pay for a further test. The worry could destroy your pregnancy experience.

drinkyourmilk Fri 20-Jan-17 11:26:15

We were in a similar position. We decided that we would want the baby regardless, so didn't do further testing.

PacificDogwod Fri 20-Jan-17 11:26:18

A 1:182 risk of having a baby with Down Syndrome also means you have a 181:182 chance of having a baby NOT affected.
You'd need to have 182 babies to have once affected by Down.
The difficulty is that there is no way of knowing whether the baby you are currently carrying will be affected or one of the other 181 ones IYSWIM.

Risk/chance is just that - a statistical likelihood.
If you want certainly, you have to consider a more diagnostic test, beyond screening.

Blossomdeary Fri 20-Jan-17 11:27:20

My DD had this - babe was fine. She did not even consider any other options and just bashed on as normal. Maybe you should do the same.

The odds are very very small.

This is the problem with screening - you should be enjoying your pregnancy and not fretting about this. You or the babe could get any number of complications, but you are rightly not dwelling on these.

Relax and enjoy being pregnant.

GivenupSocialmediaNOTMN Fri 20-Jan-17 11:27:50

I had a CVS and would have terminated.
My risk, false positive, was much much higher than yours.

I would have the test whether you want the baby or not, it could as a pp said ruin your pregnancy. x

PacificDogwod Fri 20-Jan-17 11:29:08

Consider contacting ARC - they are very good at helping you clarify your own thoughts and preferences.

None of us here can make that choice for you.

I had a 1:4 risk of Patau Syndrome and had 2x CVS and 1x amnio done, I had 4 healthy babies (also 4 MMCs). Luck can be such a random bastard IMO.

Applesauce29 Fri 20-Jan-17 11:30:07

Pay for the test - it'll put your mind at rest / help you make a difficult decision earlier. We used a clinic on Harley Street - v.good, and you can find out the sex too if you want. There was a package deal with the clinic if done at 10 and 12 weeks as they wanted data (they worked with one of the leading consultants at Kings). Results take two weeks tho, which is difficult as they have to send off to USA.

Applesauce29 Fri 20-Jan-17 11:31:39

www.fetalmedicine.com/harmony-test

TinyTear Fri 20-Jan-17 11:32:33

I would go for a NIPT like Harmony no matter what you will do when you know, just to know... i couldn't go on with the uncertainty and would want to prepare for the outcome... (also older mother with recurrent miscarriage history)

CoffeeCoffeeAndLotsOfIt Fri 20-Jan-17 11:33:34

I was given very similar odds to you. Roughly 1:190 if I remember correctly. We paid for a private test (harmony maybe?) which cost roughly £500 in the south east of England. This was in March of last year.

When I was pregnant 5 years ago my risk was roughly 1:8,500.

Results came back low risk (<1:10,000) for the 3 trisomies. If the test had come back as high risk we would have gone for cvs / amniocentesis to know for sure.

If you can afford it, I'd be tempted to go privately and have extra testing. Best of luck 🍀

Applesauce29 Fri 20-Jan-17 11:35:26

I would have loved to have gone back for additional scans with FMC but couldn't justify cost - got to see baby in 3D at viabiliy and nuchal scan which was amazing, much more detail than nhs one, and the team is extremely professional.

sunshinesue Fri 20-Jan-17 13:56:15

Thanks for your options everyone. I've got a harmony test booked for tomorrow morning. It is a lot of money but when I divided the cost by the number of weeks I've hopefully got left of this pregnancy it works out as slightly more expensive than my pregnancy yoga class...

Thanks again, your input has really helpedflowers

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