I'm seriously considering not testing for Downs

[Ladypug]

Is that really bad? I just keep thinking I'm not going to do anything about it. I won't have the amnio test and I'm so worked up about having it, I wouldn't abort a child with Downs, what's making me think I should do it is that it's the "done" thing! Open to advice x

I declined the screening for the same reasons. You could get a really high risk result - say 1:100, and still 99/100 won't have it. Or a low result, 1:50,000 and your baby could be that 1. All it would do for me, is cause a whole lot of anxiety for the rest of the pregnancy.

I wouldn't have an amino nor would i terminate so no point in the worry.

I also declined DS testing though agreed to just nuchal folds being measured (no blood test) as it can also indicate a heart defect. No one pressured me at all or even mentioned it after I said i didn't want it.

We didn't do it.

I'm with GotToBeInIt, Testing for Downs is not a thing. It's something you opt into rather than opt out of. In my pregnancy circle of mums nobody had this test and it wasn't offered to me. I could have requested it.
Also, amnio can cause miscarriage. When I heard that, I realized that the test itself might cause damage to the foetus that you might not find out about until the birth.

If you already know you wouldn't terminate for DS that's fine.

Double check with your NHS trust as lots of them run your blood work to give a risk for other trisomies that are incompatible with life. Being given a risk factor for those might be something to consider.

I think part if the issue is that the 12 week combined testing is thought if and spoken about as giving a risk for DS, which it mainly is but most other trusts will run your blood for t13 and t18. You may well have to ask and/or sign additional agreements but it is exactly the same test (blood, nt measurement, age etc)

I say this as someone who has lost their baby to t18 and decided to terminate. I wouldn't have made the same decision if she had had DS though (unless it was sever enough to be incompatible with life)

Thank you Kitty, I will look into this x

Sorry I didn't rtft!

If you already know your trust won't test for t13 or t18 and you know you'd rather not know if your baby had DS then don't do it.

Personally I like to know because I worry about the 'what ifs' but if being told your high risk and not having an amnio would increase your anxiety it seems pointless.

Issues with Edwards and pateu will show up on the 20 week scan anyway (that's how I found out) and you can make any decision from there.

My experience of amnios is they don't give them without there being other issues iyswim. The team I saw at kings found 4/5 soft markers on a scan before the consultant would sign off on then doing an amnio.

Best of luck with your pregnancy x

Thank you xx

It's absolutely your descision to make - you do what's right for you :)

They don't routinely do a 13 week scan or any testing where I live, but I'm having it done because I want to know. Again, that's my personal choice.

Everyone is different - it's your choice whether to test or not.

Hey.
I have a beautiful DD with DS.
I've got mixed feelings about the testing TBH. I would have it. I would and did follow up with a CVS amnio.
NOT because I would want to terminate.
Because knowledge is power. I had 6 months to research, network and get my head straight. 6 months to tell my family and friends and 6 months for them to come to terms with the news, to get the negativity and misinformed advice out of the way and to compose themselves to be supportive.
I can't imagine how I'd feel having to go through all of that post partum when I was exhausted and hormonal!

Also, you can decline what you like, but if the sonographer spots a problem they MUST tell you.

I didn't, for the same reason, with any of my pregnancies (over 20 yrs ago). I got grief from one GP who told me that at my age I had a high risk of Downs of one in two hundred. I then read the amino leaflet she insisted I read that said it did carry a very low risk of miscarriage of 0.5%.

For the mathematically challenged 1 in 200 is the same as 0.5%. Do whatever you feel comfortable with.

I didn't have the screening test in either of my pregnancies for the same reasons as you, OP, and I never regretted it.
Interestingly, I heard on the news very recently that a new, non-invasive, test of the mother's blood had been developed that is extremely accurate as the baby's DNA enters the mother's bloodstream. Don't know when it's being rolled out.

We didn't have it for either pregnancy. I wouldn't have had the amnio so didn't see the point.

One thing to consider is where do you plan to give birth? Unless mydefault option would be a good teaching hospital with a large NICU then being as certain as possible that my LO won't require additional support after birth would be important to me.

I would still test even if I had no intention of terminating or having amnio/cvs, because Downs comes with a whole host of physical issues (heart and bowel problems for example) that mean the birth is much higher risk, and that a newborn with downs is likely to need special additional care. I'd want to give my child the very best chance, so a high risk of downs would affect where and how I might choose to give birth, and what I would do to prepare for my child coming home.

I didn't either. Regardless of whether further tests are carried out, they aren't conclusive.

Amnio and CVS are conclusive They are diagnostic tests. You get a full genetic work up. It's 99.99% accurate.
Harmony, Nifty, NT scans and quad tests are screening tests. you get a risk factor.