did anyone decline an NT scan?

romigu

I have already scheduled my anatomy scan at 18 weeks but I am debating about the NT scan.  The false positive rate is higher than with most tests and I don't know that I would do anything differently if my child had downs syndrome or spina bifida.   if you declined your NT scan - what were your reasons for doing so?

jennicg27

I wasn't even offered one.  My DR said that I will be offered some test at my 16 week appt, but we are opting out of it.  Apparently it is like the NT scan in that there is a super high false positive rate.  There are no genetic disorders in our families (that we are aware of), and our insurance doesn't cover it. 

allieatlanta

I declined b/c the risk is so low because of my age, and like you, I wouldn't do anything differently either way. My company just switched insurance plans to a better plan, but unfortunately I have to re-pay the deductible to the new company, and although I'm covered for the NT scan, it would mean I would have to pay the whole deductible right now which I really don't want to do.

Froggy76

I did not decline, however, it bothers me when people say they would not do anything different based on the results.  You never know.  There may be a reason why you need to do research before birth to understand the condition, or even have specialists on hand at delivery to handle a special needs baby.

romigu

Froggy76:

I did not decline, however, it bothers me when people say they would not do anything different based on the results.  You never know.  There may be a reason why you need to do research before birth to understand the condition, or even have specialists on hand at delivery to handle a special needs baby.

I think you misinterpreted what I said.  When I say I wouldn't do anything differently, I meant that I would not end the pregnancy.  Obviously, if the baby was special needs, I would have to do EVERYTHING differently.  During my peds rotations, there was no need for a specialist at delivery but my hospital does  have a NICU if that is necessary. 

MrsVo

We declined it.  The risk of a false positive was too high for my worry-wart personality.  I just knew that if they found even one soft marker I'd spend my whole pregnancy worried about it.

Froggy76

romigu:

Froggy76:

I did not decline, however, it bothers me when people say they would not do anything different based on the results.  You never know.  There may be a reason why you need to do research before birth to understand the condition, or even have specialists on hand at delivery to handle a special needs baby.

I think you misinterpreted what I said.  When I say I wouldn't do anything differently, I meant that I would not end the pregnancy.  Obviously, if the baby was special needs, I would have to do EVERYTHING differently.  During my peds rotations, there was no need for a specialist at delivery but my hospital does  have a NICU if that is necessary. 

My comments were not targeted specifically at you.  This has come up a lot in the past.  "Doing things differently" doesn't just mean terminating.

smilelari

We declined because we would not be willing to follow up with more invasive tests, which makes the information basically useless.  If we had, for example, a 1 in 5 risk of something instead of the typical 1 in 10,000 all that would do is cause a lot of stress because all we would know is that we would probably have a perfectly healthy baby but that the odds of having one that has a genetic condition is greatly elevated.  Not sure if I explained that well, but because without the follow up testing in the case of an elevated result we really know nothing definitive, we'd just rather skip.

Katie429

MrsVo:

We declined it.  The risk of a false positive was too high for my worry-wart personality.  I just knew that if they found even one soft marker I'd spend my whole pregnancy worried about it.

 

This exactly

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azcobride

I declined for several reasons: My DH and I are not at higher risk for genetic disorders, I don't need the extra worry, I didn't do it last time I was pregnant, my insurance was questionable as to whether they'd cover it, and if there is an issue, it will be caught at the 20 week u/s and I can be prepared then.

rachaelski

My suckass insurance did not cover "elective testing," so no test here. Had it been an option, I probably would have had it done. My BIL was born with Downs and the family had no idea until after his birth...I know my ILs would have appreciated a little advanced notice to prepare. When I first looked into it, I heard all about the "false positive" rate, but now that I understand what people are actually referring to, I don't think it would prevent me from testing (if insurance covered it). 

I for one could not say "it would change anything." I've never been in that situation, and I wouldn't know how I (we) would react until I am actually in that position.  

angiegail78

The NT scan doesn't give you definitive answers, so there's no "false positive."  The scan combined with the bloodwork will give you a risk factor, which could be high, but everything could still be fine.

MrsNash37212

The false positive rate is only 5%. The reason we see a lot of people posting about it is because (of course) those people are more likely to post looking for support. I posted my u/s photos from the NT, but not my results. That said, if we had been classified high risk, we would have moved forward with a CVS or amnio to get real diagnostic answers, so if that is not something you would pursue, I'd say it's not worth it. For me, personally, it gave me additional peace of mind, not extra worry.

Tink112011

I declined for a few reasons:  I'm young (25) with a low-risk pregnangy, the outcome of the scan wouldn't make a difference, and my insurance probably woudln't cover it (although I didn't even bother to check)

littlekeller

At my last appointment I was asked if I wanted to do any genetic testing.  I declined.  As the OP said, "The false positive rate is higher than with most tests and I don't know that I would do anything differently if my child had downs syndrome or spina bifida."

Nothing runs on either side of the family except my husband's heart failure (which does not present until late teens for boys and early 40's for girls.)  Dh is currently under going genetic testing for this and we do not know which gene causes the issue.  Besides now that we know there is an issue we can watch for it and probably prevent it or control it easier.

My OB wants us to go to a specialist to have a 2nd level ultrasound done b/c of DH's heart failure, she said we would talk about that at the next appointment.  I am not sure if I will do this or not.  I need to find out more information.

riagal82

I did not have the test for this pregnancy or my DD. I chose not to have it because I am pretty low risk it does not run in either family I would not terminate the pregnancy and having worked with mentally handicapped individuals I understand the extra care which would be needed for a handicapped baby.

mben1119

I declined because I'm low risk, and didn't need the added stress of waiting for the test results.

rachaelski

I again wanted to add, Down's Syndrome is NOT genetic. It's a mutation of chromosomes, but does not run down family lines. Age increases risk, but not all mothers of babies with Downs are older. 

I feel like there's a lot of terms being thrown around inaccurately...."false positive," "genetic," etc.  

Cranang

Just to clear one point up though...

People keep talking about how they aren't at risk for GENETIC disorders when talking about an NT scan.  The NT scan tests for trisomies, which are NOT genetic.  And by "genetic" I mean that it's not like this condition can "run" in your family.  It's simply an extra gene at a specific place in the DNA.  So even if no one in the family has Trisomy 21, 13, or 18, that doesn't mean anything.

But to each his own on the testing...I enjoyed getting some piece of mind both through seeing the ultrasound and hearing about the bloodwork, but I do understand why women decline it.

angiegail78

rachaelski:

I again wanted to add, Down's Syndrome is NOT genetic. It's a mutation of chromosomes, but does not run down family lines. Age increases risk, but not all mothers of babies with Downs are older. 

I feel like there's a lot of terms being thrown around inaccurately...."false positive," "genetic," etc.  

Also, it's Down Syndrome, not Down's Syndrome. (Sorry, that's one of my pet peeves.)

Ready4life

We declined. Our Dr said our risk was low due to our age and medical history. He also said what is important is what you would do with the results. We wouldn't do anything.  So given all those factors, we decided it wasn't for us.

rachaelski

angiegail78:

rachaelski:

I again wanted to add, Down's Syndrome is NOT genetic. It's a mutation of chromosomes, but does not run down family lines. Age increases risk, but not all mothers of babies with Downs are older. 

I feel like there's a lot of terms being thrown around inaccurately...."false positive," "genetic," etc.  

Also, it's Down Syndrome, not Down's Syndrome. (Sorry, that's one of my pet peeves.)

I'm using the British version, apparently.  

Kit15

I'm declining the amnio but I did have the NT.  Personally...part of it was about having another ultrasound.  I wanted to see how much my Peanut has grown.

 

Two days before I was seeing teeny tiny drops of blood on the TP.  They stopped after an hour but deep down part of me was still a little anxious.  Forget Downs....I really just wanted to see the baby and hear the heartbeat again. As far as results go, we've decided we're having the baby either way but we'll cross that "what do we do now?" bridge when we get there.  We're not big worriers.

mushE

rachaelski:

I again wanted to add, Down's Syndrome is NOT genetic. It's a mutation of chromosomes, but does not run down family lines. Age increases risk, but not all mothers of babies with Downs are older. 

I feel like there's a lot of terms being thrown around inaccurately...."false positive," "genetic," etc.  

This is a very good point.  I was talking to my mom about this last night, and she was surprised I declined (my doctor doesn't recommend for me, but I am doing the blood test) because she became pregnant after having me with a child who had Down Syndrome.  She thought that that increased my risk of having one, which is not correct. 

MrsG.060708

We declined. We don't have many risk factors, and just simply chose not to do it; we weren't interested. We declined with DD as well.

ETA: Like several pp mentioned, it doesn't give a definitive answer, just a "guess." I was not willing to go through more invasive testing (such as the amnio) to get answers, so the nt scan would've been pretty pointless.

StaceyM06

The false positive risk is only 5%. That's not that high! Plus, it checks your risk for Trisomy 13/18 which can cause miscarriage and early stillbirth. From what I understand, the NT scan does not detect spina bifida. I am having b/w for spina bifida and other neural tube defects done at 16w (alot of people refer to this as sequential screening or quad screening).

I, personally, don't understand women who opt out of the NT scan especially if your insurance covers it. I wanted to find out if I was high risk for Trisomy or Downs and the CVS that can be done in wks 11-13 is less risky than an amnio which is done later. 

magel050485

We declined. We are at a slightly higher risk for T18 and a couple of minor cardiac issues that only require monitoring (tachycardia primarily).  We watched the struggles that my brother and his girlfriend faced when they received their T18 diagnosis and decided that we didn't want to go through that.  We trust that God will bless us with the baby that is meant to be ours even if he or she has special needs. (It also helps that I have two autistic cousins, a friend with a DS child, and another friend with an Angelmans child so I am already pretty connected with the special needs community in our area) 

rachelnich

MrsG.060708:

We declined. We don't have many risk factors, and just simply chose not to do it; we weren't interested. We declined with DD as well.

ETA: Like several pp mentioned, it doesn't give a definitive answer, just a "guess." I was not willing to go through more invasive testing (such as the amnio) to get answers, so the nt scan would've been pretty pointless.

This!  I am also low risk and unwilling to go through the more invasive tests, so my doctor completely agreed with my decision not to have the NT scan.  She said she has seen too many patients receive elevated risk results from the scan and bloodwork and refuse the follow-up testing, which creates an extremely long and stressful pregnancy.

AggieKim04

I declined because like another pp, I had no intentions to do any follow-up, more invasive tests to confirm findings, if necessary. My DOCTOR did mention that we weren't at high risk due to my age, and that the "false positive" risk was high. Granted, it may not actually be a positive, but the markers show high enough, then we'd have been encouraged to do more invasive follow-up tests (I believe we've already seen this on our board.) So, based on my DOCTOR's comments, and my desire not to deal with insurance on something I don't even want to worry about, we declined. There is enough to worry about as it is.