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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

Did you test for Downs?

126 replies

Ladypug · 09/03/2015 18:32

I had my first mw appointment today and she explained at the first scan we have the option to test for Downs. If it comes back high risk then testing becomes quite invasive. She said if we would have the baby with Downs then that would be a potential reason not to test. She also said some people just "feel" low risk or don't want the invasive analysis.

What did everyone here do? Did you test for it or not? X

OP posts:
Whatabout · 09/03/2015 18:37

I did it this time, it's a combined test involving s blood test, nuchal measurement and your age and weight. You then get a risk and from that you decide where to go. I got mine today 7 days after scan and it is 1 in 17000 chsnce. For me it is for the preparation not that I would terminate based on it.

ProbablyMe · 09/03/2015 18:37

It depends what you, yourself, would class as a high risk? 1 in 150? 1 in 10? Then it depends on what you might choose to do if your baby was confirmed as having DS. If you would continue with the pregnancy regardless you might decide that there is no need for further, invasive testing. You might decide you would continue with the pregnancy but that you would like a proper diagnosis just so you know. You may decide that you would not consider with the pregnancy if DS was confirmed in which case you would probably want the test. In my case our bloods plus Nuchal Fold scan gave us a risk of 1 in 5 so, although we had no intention or ending the pregnancy regardless we decided to opt for further testing to give us an idea of what - if anything - we were facing.

It's not an easy choice and I think that everyone is different and that is normal.

Sorry, not sure I've been much help.

Sparrowlegs248 · 09/03/2015 18:38

I didn't. These are my reasons...
I f it came back as high risk, I wouldn't have the diagnostic test, so all it would cause is potentially unnecessary worry. I wouldn't terminate either.

You can get a 'high risk' result, say 1:100 and not have any problems. You can get a low risk result and still be that 1 in 2000 that has downs.

ProbablyMe · 09/03/2015 18:40

I had decided I would only opt for further testing if the risk came back as rather greater than the risk of the invasive testing.

SirVixofVixHall · 09/03/2015 18:41

I had the initial bloods-plus-scan test, but then decided not to have amnio if Down's was indicated, as I didn't want to risk a miscarriage. My risk was assessed at with dd1 were 1-50,000 for Downs, I was 40, so that was a very good result anyway, and my stats with dd2 were much much higher, I think it was 1-120, but tbh I can't remember now. That seemed partly down to my age, (43) and the bloods, as the scan was fine. I was a bit worried about the huge difference from DD1, but not worried enough to have amnio, it was still better than the average odds on my age alone anyway. I have a friend who didn't bother with the tests at all, as there was Down's in the family, and she would have kept the baby, so chose not to find out.

stargirl1701 · 09/03/2015 18:41

I did both times. If either of my girls had Down's Syndrome, then I wanted to be prepared. I would've needed the pregnancy time to sort out OT, SALT and Physio as well as any other medical issues to be considered, e.g. heart. A good chance to gather resources from other parents through the Down's charities.

bluevanman · 09/03/2015 18:46

Tested for DD1, as we took a why not?! attitude.
She came back high risk - 1 in 12 chance.
We were not considering termination but to save the stress of the next 24 weeks wondering we had the amneotensis (bad sp) - which was negative

DD2 is on the way and we declined the tests as experience told us we would keep it either way

Hurr1cane · 09/03/2015 18:49

No I didn't.

My reason being that there are many many genetic conditions and disabilities that you can't test for, a lot more serious and challenging than Down's syndrome, some on par, some less challenging.

My child has a very serious mix of complex needs that they have no current test for at all. Not even post natal. So I don't see the point in DS tests.

That's just me though

FernGullysWoollyPully · 09/03/2015 18:50

I've been screened every time. I've never had a high risk. I understand that the risk factor is not certain but if I had been tested as high risk I would have had the more invasive analysis. My reasons? My other children and the affect a disabled child might have on their quality of life. It would be an extremely difficult and emotional decision but I think that if DS was confirmed, I would terminate the pregnancy.

Hurr1cane · 09/03/2015 18:54

So what would you do to a child who's genetic disabilities can't be tested for fern? DS is one that can be in a fucking lot that can't

scarednoob · 09/03/2015 18:54

when i went for an early private scan, the sonographer said that she would recommend the harmony blood test. she explained that, given my age (37), the NHS test would automatically come back as high risk, and therefore the NHS would recommend the amnio or CVS. having the blood test would hopefully negate the need to do these more invasive tests.

the harmony test is about 500 i think, but i have since found that the fetal medicine centre on harley street does the test and donates its profits to charity, so i think i will probably go for that unless the NHS test comes back very low risk.

it's all so stressful! first we have the panic about whether the scan will show an active baby (and i am TERRIFIED about mine as i have zero symptoms!)... and if we get over that, we then have to worry about chromosome testing. sometimes i wonder how anyone has had babies at all!! xx

ProbablyMe · 09/03/2015 18:55

My DS4 has a rare syndrome that can't be tested for. Although I never could have terminated a pregnancy I did want to know if there were any issues so I could be prepared.

Hurr1cane · 09/03/2015 19:00

I get the wanting to know so you can be prepared though. Although I couldn't get the amnio thing so wouldn't do the blood test for worry

FernGullysWoollyPully · 09/03/2015 19:00

Hurr1cane I'm pro choice and not up for a fight. I've given my reasons and feelings.

If my child was born with disabilities that couldn't be detected, I would obviously deal with it and love the child but I have the choice to be tested for DS and be given a definitive answer.

escondida · 09/03/2015 19:00

I've done it all.

Blood test (turned out low risk) in 1 pregnancy when was inconceivable I would have amnio or termination, 2 pgs without even the blood test, and 1 pregnancy where i skipped blood test and went straight to amnio because I wanted certainty & I was 100% sure I would terminate if chromosome defect.

It really is a personal decision.

Hurr1cane · 09/03/2015 19:01

Yup you do have a choice. I'm pro choice. I just have always wondered about what would happen if someone who'd terminate a baby for DS had a baby with a genetic illness like my son has.

cathpip · 09/03/2015 19:02

I have never had the tests on all 4 of my pregnancies, reasons being that there are so many disabilities that cannot be tested for, and we would only ever terminate a pregnancy if there was a definate incompatibility with life diagnosis.

geekymommy · 09/03/2015 19:05

I didn't. I went straight to having a CVS, which is a more invasive test.

FunMitFlags · 09/03/2015 19:06

Yes, and would have terminated.

Ztastic · 09/03/2015 19:08

I did for my first two dc but decided not to this time. I am 39 and thought it more likely I'd come back high risk. I know too many people who have worried needlessly throughout pregnancy because they were classed as high risk. I did consider the Harmony test which is diagnostic rather than a risk range. I think Harmony (or similar testing) will become the norm in future. As some others have mentioned there are alot worse genetic conditions that aren't tested for than DS.
The best thing to think about is what would you do with the result, if it's nothing I'd prefer the ignorance is bliss approach... But it's down to individual preference. Try not to worry xx

blacktreaclecat · 09/03/2015 19:09

Yes, and the nuchal was 11mm. Yes it was DS and yes we had a tfmr.
It was right for us, despite it being a much wanted pregnancy.

Cariad007 · 09/03/2015 19:10

Yes, I tested and I always would test because they don't just screen for Down's - they also screen for Edwards and Patau's syndrome, which are far more serious and tend to be incompatible with life. A friend of mine had a TFMR because her baby had
Edwards and the doctor said that one of three things could happen - she could have a late miscarriage (dangerous to her), the baby would be stillborn or the baby would be born alive but suffer terribly and die soon after.

One thing I've heard about the invasive tests is that it very much depends on the doctor doing it - the risk of pregnancy loss isn't just a standard number across the board, it can be much lower with a skilled doctor.

hazeyjane · 09/03/2015 19:10

I had antenatal screening and extra scans, because of a family history of Edwards Syndrome. I wouldn't have terminated if the scans had shown Downs Syndrome.

Ds is disabled and has a genetic condition which didn't show up in any scans or tests.

GoooRooo · 09/03/2015 19:16

scarednoob that's RUBBISH that it will automatically come back as high risk at your age. I was 37 with my first child and my risk with the scan and bloods came back at 1 in 1,500.

I'm having the scan and bloods again. I won't be having an amnio.

I am far, far more scared of Edwards or Pataus than of Down Syndrome.

hazeyjane · 09/03/2015 19:18

yes, I was very low risk when pregnant with ds, at the age of 40. He still has a genetic condition though!

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