Downs screening - yes or no?

Ziggie

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What are people's thoughts on it?

I'm thinking about not getting it... Mainly because if it comes back as high risk, I don't know whether I'd want the more invasive testing done... Plus I'd likely still want to continue with the pregnancy... So, is it worth it? I'd just feel stressed out.

I just don't know what to think. Any advice?
 
I got it done but only because I thought, might as well. I suppose I thought if the test came back high risk, I would worry about that then.
 
I didn't. Knowing the risk of false positives and the fact that I am a total worrywart, I decided it just wasn't worth the stress.
 
We just discussed this this past weekend and came to the conclusion that for us, knowledge is power.

We would rather know if something is wrong, than have it thrown upon us at birth. That way we've got several months to research and prepare for any given complication.

No test result would affect our decision to continue to carry baby, but it definitely could give us the opportunity to seek access to professionals and other moms and dads who could help us cope, maybe even help baby survive. I personally would feel less stressed if I was prepared and had the chance to work up to a place of acceptance by the time I hit birth, instead of having to scramble with sorting all that out then and with a new higher needs baby at the same time.

I do understand why couples could go either way though.
 
That's a valid point :)

So much to consider. Meet the midwife next week, it's definitely high on my list of questions.
 
I struggled with this decision too. In the end, we decided to get it done mostly for the reasons listed above. Plus, DH really wanted to do it, I was the one who was on the fence. I have my genetic screen next week at 12+3 and am hoping like crazy everything comes back within normal range. :flower:
 
We didn't get it done last time and won't again this time. I felt that telling us that we may have a baby with Down's syndrome wasn't particularly helpful. People worry about the results despite often still a high chance of a healthy baby. Amniocentesis carries a rind and we would def continue the pregnancy regardless. Down's syndrome affects so many children in different ways and only time would tell how disabling it would be for the baby but I think I would worry through the pregnancy that they might struggle with associated complex health problems etc but really you wouldn't know anything concrete until they are here and growing up.

When we declined it the scanning staff did think it's rather odd and can't really understand it, just to let you know!
 
Nope we're not having it done, if our baby has downs it won't change a single thing and I'd certainly continue with my pregnancy, so we will just wait and see :)
 
Thanks guys :) pretty sure we won't get it done.... We both immediately felt that way, but wondered what the general consensus was.
 
I opted out of the testing last year when i was pregnant, for all of the same reasons listed here.

It was only when i went for my 16 week scan that i got the absolute shock of my life when i was told there was something major wrong. I was sent for an amnio which came back with turners syndrome. Our little girl died at 18 weeks.

I have no choice this time and have to have all the testing. We have decided to go for the panorama blood test at 10 weeks.

I wont be able to relax till all the testing is over with.
 
bumpbetty - I'm so sorry to read about what happened with your daughter......I will be keeping fingers crossed that all is well with your little one this go around and you can let go of the stressful waiting soon.



For those of you who don't do the blood testing for things like downs, I'm curious if you also opt out of routine ultrasounds and other testing for the same reasons?
 
I did it last time, but chose not to do an amnio. This time I am getting the blood test done that tells you. I wouldn't do a test that could risk a miscarriage, but if my child does have something I'd love to know now so I can prepare. The new blood test is great as there is no risk of miscarriage and it is as accurate as an amnio!
 
We decided to get screened for cystic fibrosis because we have lung issues in my family. We will not test the baby until birth though.

We haven't decided if we will do the triple/quad marker test but leaning towards not as I think our 20week scan should show any issues. We chose not to do a NT scan.

I work with special need kids and my foster boys are special needs adding another isn't a big worry. I just take each day as it comes. Not to mention most likely any special needs will be either obvious or unable to diagnose until the toddler years.
 
messica- Personally I would not skip out of regular ultrasounds. There are so many physical conditions that can be found on the ultrasound that may require immediate attention at birth in which case you want to make sure to have the appropriate medical staff at birth as it could determine weather your child will survive or not. i.e.- one of the lungs might not have fully developed or the bowl is not completely inside these are very rare but can be survived if treated immediately at birth.

As for the testing I think it depends on you. I would rather know and prepare but would never get an amnio to confirm as it could pose a risk to the baby. If you think you would rather deal with it at the moment there is nothing wrong with that.
 
Obviously this is a personal decision.

I decided on NIPT BC it tests for T21, T18 and T13 as well as the number of sex chromosomes. My dr's do Verifi.

The most important thing to know about all NIPTs is they test placental DNA and therefore are as about as accurate as CVS. Only amniocentesis tests fetal DNA and that is why an amniocentesis is suggested to confirm any positive results from a NIPT.

Whatever you decide, have a wonderful and healthy rest of your pregnancy.
 
It's great that you are thinking about this and I wish I had given it some more thought before I went ahead and had it done.

My combined test I had at 12+2 came back as high risk for Down's Syndrome - 1/40. I was shocked as I was not expecting this. I was told that even based on my age alone the risk would be 1/110 (I'm 38) so had I known this before having the test I would have reconsidered. I knew that I did not want to risk an amnio so I had the Harmony blood test done last week which is almost as accurate but with no risk to the baby (downside - in the UK it costs around £500-650 out of pocket).

So I waited 2+ weeks for the first test and 2 weeks for the second (I've got another week to wait). That's a lot of waiting and worrying and I really wish that I had gone straight for the blood test, which you can have from around 10 weeks. I pretty much knew that I would continue with the pregnancy regardless but would want to know in advance whether there are any problems. Personally, I don't trust the NHS screening as there are so many false positives and they just make you worry, mostly unnecessarily. I watched the sonographer do the NT measurement (I used to be a radiographer) and for a procedure that needs to be so accurate, I really have my doubts it is done properly with the aged equipment and techniques the NHS has compared to private practice.

I think if you can go the whole pregnancy without worrying either way, then don't have the testing. But if you want to know for sure without waiting too long to find out, then I'd suggest the blood test. You can also have an amnio much later in pregnancy that carries virtually no risk for the baby.

Good luck with your decision and I wish you all the very best.
 
I had the blood test with DD which was low risk, and plan to with this one as well. I don't think I'd get the amnio, because even if baby does have down's, I wouldn't want to risk a miscarriage. Like a PP said, I would just like to know if there is a higher possibility so that I can better prepare.
 
I didn't have it with my son and if asked won't with this baby either. Either way I will continue the pregnancy, I've had a very hard pregnancy this time and don't need the added stress :)
 

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