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Original poster

1 in 116 for Downs

34 replies

Cosmo89 · 13/12/2011 17:11

Scan done at 13w6- does this make a difference?

Would really really love to hear other people's experiences on this.
Terrified.
Hospital says need to do an amnio

OP posts:
franke · 13/12/2011 17:17

Sorry to hear you're feeling so worried. Just remember a 1/116 means you have a more than 99% chance of having a baby without Downs syndrome. I was automatically given odds of 1/100 for my last baby simply because I was 40.

I can't advise you about the amnio but someone will be along with relevant experience. Take care.

helenlouisey · 13/12/2011 17:23

Hi cosmo, sorry to hear about your scan results, I don't think the fact you've had the scan at 13 w6 will make a difference, as size and gestation of the baby is factored in when calculating risk.

Are you any where near london? If so I would suggested getting an appointment at the Fetal Medicine Centre, they are the countries experts when it comes to the nucal test, and they will do bloods just before your scan and do a very in-depth scan and have vert sophisticated software for calculating your risk.

The charity ARC offer help to women in your situation so maybe give then a call ?

Also maybe post on the antenatal tests and choices section as there are lots of ladies on there who have been through a similar thing and will be able to offer some support and advise.

X

justabigdisco · 13/12/2011 17:23

don't forget that means a 115/116 chance that baby doesn't have Downs.

MrsHoarder · 13/12/2011 17:29

Don't know about the aminio test itself, but I've studied the stats behind the blood test.

The scan time is less important than if you managed to get the blood test done withing 2 days of being 16 weeks. The further you get away from that the less acurate the blood test is.

That said, you know that there is a 99.1% chance that the baby will not have Downs, and about a 0.9% chance that they will based on the tests done to date. Whatever the hospital says, it is up to you whether you want more tests or not, and your decision on that should be based on your personal beliefs and family situation. Hope someone with experience of the aminio is along soon to offer you more advice.

bettieblue · 13/12/2011 17:40

Hi

I had a 1/100 age related risk which reduced to 1/60 after my scan and bloods. You don't have to have an amnio, I did because I wouldn't have continued a downs pregnancy. The amnio was very straight forward, they took there time, it wasn't rushed, there were 2 people in the room consulting the best place to take the fluid from. I didn't watch but didn't feel anything much and was surprised when they said theyd finished. The wait is awful but my results were negative and i have a healthy DS.

I know the stress and worry is awful but yours really aren't terrible odds.

oldenglishspangles · 13/12/2011 17:50

my bloods came back 1 in 55 for downs. I had a nuchal fold as well so allegedly more accurate risk factor than just bloods alone. I was incredibly stressed and opted to have amnio. The person doing the amnio said that the risks of miscarriage were actually less than 1 in 100 but they have to give a figure because there is a small risk. That particular individual had done hundreds and had yet to have a mother miscarry. In addition we paid £60, at the time (it was a couple of years ago), for what was called a fish test. This means that we got results for downs from the amino within 3 days rather than waiting 2 weeks + for the full results. Thankfully it was clear. There other things that they test for with Amnio but we were happy to wait for the full results for those. It was an incredibly stressful couple of weeks even after we got the results because I was still worried about miscarrying.

bruffin · 13/12/2011 17:51

I had a 1 in 60 after blood. We chose to have an amino which came back clear for downs.

oldenglishspangles · 13/12/2011 17:51

Forgot to add the amnio was not painful.

Theas18 · 13/12/2011 17:53

115/116 chance of a baby who does not have downs syndrome doesn't sound bad to me.

1/100 chance of miscarriage after amnio. Statistically therefore almost all the miscarriages after amnio are of health foetuses. For me personally that risk isn't worth taking but it is entirely up to you and I'd echo what has been said about getting an urgent specialist 2nd opinion.

Awful worry for you, sorry.

Housewifefromheaven · 13/12/2011 17:56

Hi I had a 1/16. I was 30 years old. The amnio was uncomfortable (I'm not going to lie) however I feel looking back it was to a certain extent because I was stressed/nervous/tense etc etc. Everything turned out fine.

Combinearvester · 13/12/2011 17:57

Cosmo what was the nuchal fold measurement? This is the most important indicator and the size can be affected by how far along you are. And how old are you?

Original poster
Cosmo89 · 13/12/2011 18:51

Thanks all: you're helping me put this into perspective.
Bloods were fine. It was my nt measurement she said was the issue. 3.40mm
I'm 33 and apparently 13w 6 days (5 days further along than I thought....)

OP posts:
whenskiesaregrey · 13/12/2011 19:17

Cosmo, we had a 1/100 risk with DS after two soft markers were picked up on his anomoly scan. The next 22 weeks were so worrying, it us horrible. We didn't have the amnio, because we wouldn't use the information given. DS was fine in the end, but it was very worrying, and completely ruined our 20-week scan :(

I posted on here about it, and I remember someone saying you wouldn't back a horse at 100/1, which is true.

Combinearvester · 13/12/2011 19:36

3.4mm is within normal boundaries in my area. FWIW second baby had 3.5mm at 12+5 (so would def have been bigger than yours at 13+6) and baby did not have downs syndrome.

cece · 13/12/2011 19:48

I had 1 in 50 chance of downs after scan and bloods. I chose not to have any further tests as for me I would not have aborted for Downs so it seemd pointless to go ahead with them. As it was I had a late mc at 19 weeks, so was pleased with my decision.

MrsJAlfredPrufrock · 13/12/2011 19:48

Cosmo - Where are you based?

If you can afford it, I would heartily recommend you get yourself to the Fetal Medicine centre in London for a CVS: they do them all the time and they are therefore very expert. They recommend the Nuchal Scan is done before13+6.

If it's any comfort, I had a 1 in 7 result and all was fine. I always felt it would be but I don't think I could have stayed sane throughout a long pregnancy.

Ilovekittyelise · 13/12/2011 23:40

1 in 116 is really not very high and your nuchal measurement is not big.

to whoever said their risk DECREASED from 1 in 100 to 1 in 60 - thats an increase in risk!

TheSecondComing · 13/12/2011 23:45

This reply has been deleted

Message withdrawn at poster's request.

Original poster
Cosmo89 · 14/12/2011 00:12

True thanks for your responses. I'm starting to feel much more equipped for this. And you're all so right: it's not the worst in the world. Many are much worse off.

Its a shame I'm at 13w6- though im really not convinced by this (knew pretty much when I ovulated and conceived and should have tallied with the 13w1 I thought I was...)I'd have preferred to have another scan before signing up to an amnio, and would have paid for it, but I think it's too late now. I'll just have to make the decision with reference to scan results today.

Am holding off telling everyone until I make the decision and/or have the test.... Though its starting to become slightly obvious there's something there.

OP posts:
TheSecondComing · 14/12/2011 00:22

This reply has been deleted

Message withdrawn at poster's request.

KarenMillenCoat · 14/12/2011 00:42

I had a 1 in 151 risk of DS which threw me as I am only 25. Neither scan had showed any anomalies and we were advised that as the cut off point for high-risk was 1 in 150 there were no further tests recommended.

We paid privately for a "quad" test which was a detailed scan with further bloods and again scan was clear of any markers but blood results were bad and our odds were calculated as 1 in 13.

NHS offered to carry out an amnio at this point as I was desperate to find out whether the baby had DS. Not sure what I would have decided but I needed to know one way or the other as the uncertainty was torture.

Amnio luckily went fine, results were clear and DS is sleeping next to me.

Please don't torture yourself, my result was never explained and I was told to put it down to an imbalance of hormones.

Take care of yourself, this is a horrible thing to go through but the odds are stacked in your favour! Best of luck, whatever you decide.

MrsJAlfredPrufrock · 14/12/2011 13:42

CVS is a very good alternative to an Amnio as it can be carried out sooner.

Good luck, OP.

ilovesprouts · 14/12/2011 14:36

mine was 1-250 ds2 now five

saintlyjimjams · 14/12/2011 14:43

You don't have to have an amnio or cvs - you'll just be offered one because of your risk. But it's your decision, not the medics. Don't lose sight of that.

First question is what you would do with a positive result? If you wouldn't terminate you might feel that you'd rather ask them to look for soft markers at the 20 week scan and not have an invasive test.

To put it in some other perspective the average risk of autism is higher.

Tigrelily · 14/12/2011 17:16

Hi there, I was given a 1 in 40 chance after the combined test, and I'm only 30. After panicking and being upset for days, I asked myself if the invasive tests would change my mind as to whether I would have my baby, and the answer was no. I opted for specialist scans at 18 weeks, including a 4d one to check baby's features and measurements again, and we were given the all clear. Of course, this was my personal view, and may not be the same as others... Good luck with whichever course of action you decide is best xx