Thinking of declining the FTS Screening for chromosome conditions

jessmke

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I have to decide whether or not to do the FTS screening for things like down syndrome and trisomy 13. I have heard that they are not very accurate, and my husband's friend was told with 3 of his kids that they had down syndrome and they were wrong all 3 times. I feel like it wouldn't change anything for me, I wouldn't elect to terminate the pregnancy if I found out I was having a downs baby, so what's the point? They could get it wrong and I could spend my entire pregnancy planning and researching a downs baby and then have the baby come out perfectly normal. Has anyone else chosen to decline this screening?

(I think in some other countries they call this the nuchal translucency test.)
 
I've declined screening with my past two pregnancies, the way I see it there's no point as I wouldn't have amniocentesis due to miscarriage risk. I've always waited till the twenty week scan when they can detect lots of problems anyway.
 
I declined on my last pregnancy and plan to decline for this one as well. The results are very inaccurate! And really not something I feel would make me feel more secure about my pregnancy.
 
I had the genetic screening but only because a) it was through a blood test so it was risk free and b) it also told us the sex! I'm impatient :) I would not have terminated if there were any issues detected but it would have changed my birth plan. I want to have the baby at a free standing birthing center, if there were issues I would want to prepare myself (and have my midwives be prepared as well) and give birth at the hospital instead. So anyway, that's why I chose to have it done :)
 
I feel the same way. I had it the first two times and this time I feel the exact same way, we are having a baby one way or another regardless of what any test says!
 
I'm a doula this is precisely what I encourage my clients to do in the even the results would not change their plans. It's perfectly sensible to decline the scan. It saves your baby exposure to ultrasounds and saves you from stress and anxieties.
 
I had it with my 2 nd declined with my last one and I am with this one too.

With my 2 nd the lady was very unprofessional and said everyone who has had these results their baby has had a disabilty a lot of worrying and an amnio later and there was nothing wrong. Not having it again!! Xx
 
It's a very personal choice but you should be aware it's not just Downs that the screening looks at.
I had the NT test and a high NT measurement was picked up. On the back of that I had a detailed cardiac scan and issues were found with her heart. Hopefully she will be ok but I need regular scans and she will have tests immediately after birth.
We declined amnio but we would much rather know now about the heart issues so they can be properly managed and she can get the tests and help she needs without delay.
 
Didn't have it last time and won't this time. It will not change my plans for this pregnancy either way and since the results are not completely accurate and I would never agree to an amnio either there would be no point in worrying myself. There will be plenty of dr ans nurses on hand at the birth to give me any information I need if baby were to have something like Down's syndrome.
 
I declined last time and will again if we have another. It wouldn't change anything for me.
 
I didn't have it with daughter, but only bc I knew I was already high risk (1:11 for trisomy 13, 18 and 1:17 for Down Syndrome) due to age, so I did the scan part of the screening and then the MaterniT21, which is a blood test that tests the fetal DNA for chromosome differences. It gives you a positive or negative, and not a ratio like the screening.

Personally, if I hadn't already been high risk I would have had the screening. I'm one of those people who like to have all the information I can so I can make better decisions. And I'm not talking about decisions regarding termination, bc that's not even an option for me. One of our local newscasters posted a blog about her daughter's birth and has continued blogging. Anyways, this newscaster and her husband were both in their 20's and healthy. They had all the usual ultrasounds during pregnancy with no red flags. She gave birth and her daughter had Down Syndrome. She said she grieved the first few days after birth; not bc she didn't love her daughter to pieces, but she grieved the life she had dreamed for her daughter. She said she spent those first days doing tons of research and gathering information. She said all the family and friends who had gathered at the hospital for the birth had no idea what to say. She went on and on, but in the end she said she wished she had known beforehand so she could have enjoyed the birth and days after instead of being in shock, not knowing what to do and so forth. I know I'd be the same way. Plus, what another poster mentioned, I'd want my doctors prepared so that baby would have the specialists needed if there was something wrong. This would have meant I'd have had to deliver her at different hosptial than the one I had chosen. But that's jsut me.

It's such a personal decision. My sister is totally opposite of me and is more of a 'go with the flow' type person who deals with something when/if it happens and doesn't worry. The screening wasn't routine way back when she was pregnant, but I'd bet that if it was she would have declined.

I would like to point out 2 things: one is that this is just a screening. It can't tell you if anything is actually wrong with baby. It doesn't give false positives bc it doesn't give a positive or negative result. It's just a ratio. Any sonographer that tells you that your baby will have a disability due to this screening shouldn't be doing ultrasounds!

the second thing to keep in mind is that there are now noninvasive tests that can give you more definitive information (like the MaterniT21 I mentioned) You don't have to do an amnio anymore.

Good luck with whatever you decide.
 
I think there's a lot to be said for being prepared even if you know you won't terminate.
I had a Harmony test which is similar to the MaterniT21. Interestingly the Harmony doesn't claim to be diagnostic and gives odds, not positive/negative, but it's very very accurate compared to the NT test. The MaterniT21 has roughly the same reliability as the Harmony- it's not 100% accurate either.

I agree that parents should never be given a positive/negative result based on an NT test.
 
Just to add I'm still having the twelve week scan itself for dates etc just not the nuchal screening
 
I declined it with all 3 of mine and will decline it again this time! xx
 
I've decided not to do it too, and am so glad I decided not to. I've seen several girls post on another forum about their inconclusive results and they are so stressed out, not knowing if something really will be wrong or not. Many are going for further more invasive tests as they are so stressed and worried.

It won't change anything for us, if something is wrong they can't do anything about it. Just seems like unnecessary worry for me personally that I don't need.
 
Whether they can do something about it or not depends on what's wrong. No, they can't cure chromosomal disorders. But there are many associated problems - e.g. heart defects or problems with the gut, that can be tested for non-invasively and can be treated.

For example, my little girl heart defect was picked up following a high NT measurement. Now she will be monitored closely. If problems occur with her heart rate there's medication I can take potentially take whilst pregnant to help her. If the regular scans show a deterioration they may decide to deliver earlier to help her. Even if she is born well she will have scans after birth to check for heart defects and malrotation of the gut. All things which picked up early can be very treatable. But they wouldn't be picked up early if I hadn't had the NT screening.

I don't intend to try and persuade anyone one way or another. It's a very personal choice. I just wanted to make sure people are aware it's more complex than odds on Downs Syndrome.
 
Whether they can do something about it or not depends on what's wrong. No, they can't cure chromosomal disorders. But there are many associated problems - e.g. heart defects or problems with the gut, that can be tested for non-invasively and can be treated.

For example, my little girl heart defect was picked up following a high NT measurement. Now she will be monitored closely. If problems occur with her heart rate there's medication I can take potentially take whilst pregnant to help her. If the regular scans show a deterioration they may decide to deliver earlier to help her. Even if she is born well she will have scans after birth to check for heart defects and malrotation of the gut. All things which picked up early can be very treatable. But they wouldn't be picked up early if I hadn't had the NT screening.

I don't intend to try and persuade anyone one way or another. It's a very personal choice. I just wanted to make sure people are aware it's more complex than odds on Downs Syndrome.

I agree with you which is why I'm still having the scan just not the Nuchal bit. They will still look at his/ her heart etc. hope your little girl is ok x
 
We had to test, not that we would have terminated should there be problems but so that we could be prepared if there were. I know they aren't always accurate but being told that there was a 1 in 30000 chance that our child had downs was a reassurance for us. X
 
Thanks everyone for the replies! Just to be clear, I will still do the scan at 12 weeks, just debating whether or not to do the nuchal translucency part. I'm leaning more towards not doing it, and I am going to discuss with my doctor about the whether or not the other ultrasounds we do throughout pregnancy will detect heart/GI/etc problems. I would sure hope it's not just the NT screening that would detect such problems, but I will discuss with my doc just to be sure. If the other ultrasounds are sufficient to detect such defects, then I will decline the NT screening. Thanks again for all your input!
 
Just to add to my experience - we were referred for in-depth specialist cardiac scans due to the NT measurement. The heart defect wasn't picked up at the normal scan. Whether it would have been picked up later or not I can't say for sure.
 

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