Nuchal translucency screening?

[amldaley]

Anyone BTDT? I am concerned about limiting the number of ultrasounds during pregnancy. As it is, I am 11 weeks and have had 2 already due to being high risk. I will have another 2 this month alone and I am really concerned.

Nuchal translucency screening sounds like it is only as risky as any other ultrasound, but it does make me nervous that I am having a test for no other reason than my age.

Anyone BTDT? What made you decide one way or the other? Any reason I should NOT do this test? I have to decide fairly soon.

[BabbyO]

Anyone BTDT? I am concerned about limiting the number of ultrasounds during pregnancy. As it is, I am 11 weeks and have had 2 already due to being high risk. I will have another 2 this month alone and I am really concerned.

Nuchal translucency screening sounds like it is only as risky as any other ultrasound, but it does make me nervous that I am having a test for no other reason than my age.

Anyone BTDT? What made you decide one way or the other? Any reason I should NOT do this test? I have to decide fairly soon.

I did it for my last 2 pregnancies (wasn't offered for my 1st). I decided to do it because I'm a little older and the doc said he'd recommend it for all patients if insurance covers it. He feels it is more information that parents can use in determining their health care plan.

This made sense to me. Furthermore based on my results I decided I didn't need to opt for anything more invasive. It just put my mind at ease.

I'm glad we did it if for no other reason than some of the preliminary questions led the geneticist to discover a potential elevated breast cancer risk due to my family's history. This could allow me to get early screening covered by my insurance.

[AnnieW625]

I did it with DD2 and it just made sense to both myself and DH. I didn't have that option with the baby we lost (or with DD1) so I took advantage of everything I had available to me. Had my insurance not covered it I probably would've paid for it just for peace of mind. If my clinic had not offered this I most likely would've done CVS test.

I had one other ultra sound at 20 weeks during my pregnancy. Because of the loss of the other baby I thought I would've been classified as high risk and I wasn't and it was honestly a huge relief that I wasn't.

[barkley1]

I had it done, and honestly would NOT get it again. It did nothing but cause me IMMENSE stress over the results. i didn't even get "bad" results, but you still compare yourself to those with better results, wondering if there's something wrong w/ your baby. I had a 1:1800 risk of DS, but couldn't help wondering why so many women older than me (32) were getting results of 1:10,000!!

Thank GOD the lab "screwed up" and ran the full panel again instead of just the one more test for spinal bifida that my dr ordered b/c it readjusted my risk to 1:8800. I don't know how I would have stayed sane the rest of my pregnancy given my anxiety level over the 1:1800 (1:200 is considered high risk odds for DS). Crazy, I know. My husband about pulled his hair out about how consuming it was for me, but that's just ME. You have to decide if you want to deal with those issues or not...I would skip it if I were having any more babies. Major stressor for me!

[janine]

To me this was a very valuable ultrasound. It is non invasive and you learn/see alot. The NT measurement is a key indicator as is the bloodwork. If this sort of thing stresses you out, then opt out, but I found it very informative.

I don't think u/s pose any kind of risks, even multiple ones, but perhaps I haven't dug into the data enough.

[ged]

I was seriously high risk with DD2, and probably had 15+ ultrasounds, at least, over the course of my pregnancy. Including the Nuchal. This seems to be just another screening test that some may be against, but most find informative.

[Hawkeyewife]

My question is what does this test tell you? Will it change the outcome of the pregnancy? Would you terminate if the results indicate Downs or another chromosomal problem? I have already in my relatively small group of pregnant friends had two that had false positives for downs from this test. They chose not to terminate, but both families suffered during the pregnancy. Both babies are just fine.

My SIL was told her son had a good chance he had hydrocephalus (which he did not) and suffered through her pregnancy with weekly scans only to have an unexpected surprise at birth when he was born with 12 fingers and 12 toes (not found on the scans.) Since then, I really do not have any faith in the accuracy of ultrasound. I did not have a single scan with my last two babies. False positives and negatives happen all the time.

[mommyp]

I did it this pregnancy (not previous) because I'm older now. We did not want any invasive screening, so this in combination with the bloodwork panels seemed like the best option. I found it informative and I was glad we did it. I have had 3 ultrasounds (1 in office at 1st appt for dating, the NT one, then the anatomy one at 20 weeks). The NT one is just the same as any other ultrasound.

[barkley1]

To add to PP....OR would you take the risk of an amnio if the results came back "positive". It's actually not a diagnostic test (doesn't tell you definite yes or no), but just a screening tool to calculate the odds.

The odds (national statistic, not specific to your dr) of losing a baby due to the amnio procedure are about 1:200. so, that's why they say that using the Nuchal screening, 1:200 is "high" risk and they recommend the amnio. If you had odds better than 1:200, it would not make sense to get the amnio b/c you'd have a greater chance of losing the baby than actually having ababy w/ DS.

[mikala]

We had it done the first time around but I'm not sure if I'd do it again w/ a future pregnancy. On the up side it was my first U/S and I loved seeing the baby for the first time at that test. On the flip side I received "good" odds but even then it still made me think about the numbers more than I normally would and the wait for the numbers was stressful.

The main decision point for me in the future is the "what if?" path. Before going into this I'd ask yourself what you'd do differently based on the results. Would you stop the testing there or would you proceed to more invasive testing like an amnio? We all handle these decisions and the stress around them a little differently so I'd think about what this could lead to a little with DH before getting the test.

[swissair81]

I wouldn't. That would be because I would have no intention of terminating for any reason. No need to make myself crazy.

[BabyBearsMom]

I wouldn't. That would be because I would have no intention of terminating for any reason. No need to make myself crazy.

But there is more to it than just terminating, right? If you end up being high risk, you might want to know that so you can begin to learn about and prepare for a child with special needs. Personally, I am a numbers person, and I like knowing the probability of issues so I can make decisions and prepare myself and my family.

[janine]

But there is more to it than just terminating, right? If you end up being high risk, you might want to know that so you can begin to learn about and prepare for a child with special needs. Personally, I am a numbers person, and I like knowing the probability of issues so I can make decisions and prepare myself and my family.

This topic comes up alot in different forms. Personally I agree with the above - I am a need to know/analytical kind of person and I like knowing as much as I can especially when the test is non-invasive.

[mommyp]

:yeahthat:
I'm a planner, it's all about knowing as much as possible.

[swissair81]

But there is more to it than just terminating, right? If you end up being high risk, you might want to know that so you can begin to learn about and prepare for a child with special needs. Personally, I am a numbers person, and I like knowing the probability of issues so I can make decisions and prepare myself and my family.

Numbers are very nice- assuming that numbers are always accurate. All of these tests have a false positive rate. I have personally attended deliveries where we were expecting serious problems that just weren't there. I have talked to moms who were urged to abort because their baby had Trisomy 18, and there was literally nothing wrong with the baby. I lived in fear my whole last pregnancy. I was very high risk. I knew that there was a large chance that my pregnancy problems were stemming from genetic problems with the baby. This isn't a hypothetical situation. I was there and I chose not to know. I would make that decision again.

[babygirl1029]

I had this done with my DD and my current pregnancy (19 weeks along now). With DD nothing unusual came up. With this pregnancy we found out I have a low PAPP-A score which meant I was considered high risk for placental issues. The main issue is that the placenta may not support the baby past 20 weeks and he will stop growing. It's not a direct correlation but there is the associated risk with this abnormal marker. Initially my husband was upset that we had this done but after talking with our perinatologist we realized it really was a blessing because now the baby will be closely monitored for poor growth. If he stops growing he will be delivered early whereas without the extra monitoring he may had been a stillbirth. A friend of a friend lost two babies due to this issue because they stopped growing at 20 weeks and 23 weeks. I will also will be followed for additional risk of preeclampisa due to this marker. IMHO, it can cause stress it can also be a helpful tool.

[janine]

Numbers are very nice- assuming that numbers are always accurate. All of these tests have a false positive rate. I have personally attended deliveries where we were expecting serious problems that just weren't there. I have talked to moms who were urged to abort because their baby had Trisomy 18, and there was literally nothing wrong with the baby. I lived in fear my whole last pregnancy. I was very high risk. I knew that there was a large chance that my pregnancy problems were stemming from genetic problems with the baby. This isn't a hypothetical situation. I was there and I chose not to know. I would make that decision again.

That's unfortunate you had such a bad experience, living in fear is not the way to have a pregnancy and I'm sorry you went through that.
However it's important to focus on facts as well - NT scan (if done with triple screening, ie, blood/ultrasound/NT measurement) has an accuracy rate of 90% (of course each person must confirm this with your own provider). An amnio has an accuracy rate of 99.9% as this involves DNA testing. The risk of m/c from an amnio ranges but can be as low as 1/1000 for a doctor who conducts this routinely. The reason why the 1/200 number is quoted is because it is a national average and includes all m/c's around the time an amnio is conducted - even ones not directly linked to the amnio. I have not heard of cases where T18 was diagnosed and mothers encouraged to abort without a diagnostic test (amnio where there is close to zero chance of it being wrong).

Each person makes their own decision, but it should be based on facts and research taking into account that person/persons' philosophy/temperment (ie get stressed out very easily vs. need to know person,etc.).

[veronica]

This topic comes up quite frequentyl and there are so many different reasons to make your own decisions.

I can only share our story. it was not offered to me for DD but was for DS and I was excited to be able to see him in another ultrasound. Within minutes, the physician said there was something "majorly wrong" with DS. He said that it was so bad, he didn't even order the blood test. He said that DS should have likely miscarried by then and that he expected me to miscarry or, at the very least, deliver a child that likely would not survive. He then very loosely advised us to terminate and try again because age was on our side. We were told that if the CVS results did not come back with a chromosomal defect, it would be a major heart defect.

This was in 2007 and screening had just been ok'd for insurance so we went to a very skilled and prominent perinatologist , who did the screen himself. He said that out of near 1,000 screenings, only 3 had NT measurments as large as DS.

Because of his lack of bedside manner, we sought out a second opinion and went to one of the most prominent groups in NYC. Since the window for an accurate NT was pretty much over, they tracked the rest of our pregnancy very thoroughly. I did do a CVS. I had to do bi-monthly ultrasounds and had to wait until we could do an echochardiogram on DS heart (near 17 weeks). It was a pregnancy plagued by fear.

DS was born "normal", but not one day goes by that I don't worry or think about it still.

I did do it again for the twins but declined further testing after our preliminary results came back ok.

This screening is not just for Down Syndrome. discussing termination based on the belief that the NT scan measures the liklihood of only one chromosomal defect is grossly innacurate. There are several other conditions that can be identified with this test.

[Gena]

But there is more to it than just terminating, right? If you end up being high risk, you might want to know that so you can begin to learn about and prepare for a child with special needs. Personally, I am a numbers person, and I like knowing the probability of issues so I can make decisions and prepare myself and my family.

This is true. However, if there is in fact something "wrong" with the baby, the mother can be put under tremendous pressure to terminate, even when she makes it clear that this not what she wants. Many parents do not want to put themselves in that position.

I was offered this test with DS, although at that time it was not in widespread use and was reserved for high-risk pregnancies. It was offered because an early ultrasound for size and dating found a cystic hygroma (fluid filled mass on the back of the neck). Based on just having the CH, we were told that there was a 50% chance the baby had a chromosome abnormality that would result in fetal death. We agreed to monitor the CH through a series of level 2 ultrasounds, but I declined blood test, amnio, etc. The bloodwork would have changed the odds a little, but it would not have given us any certainty one way or another, so I didn't see any real value in it.

But with a 50% chance of an abnormality, DH and I were pressured by many people to consider termination, even though we made it clear that this was against our religious and personal beliefs. I simply cannot descibe how hard that time was. There is a real lack of support for families in that situation. This was the biggest reason we did not do the amnio; because if we knew for sure something was wrong we would have faced even more pressure and that was not what we wanted.

Thankfully, the CH resolved by the middle of the 2nd trimester. After that I was finally able to relax, but I was still considered high risk for the remainder of the pregnancy.

The ironic thing is that DS has none of the conditions that the nuchal test screens for or that would have shown up on amnio and the conditions he does have - autism and albinism - do not show up on these tests. He does have a chromosome abnormality, a microdeletion on the 19th chromosome; but that would not have shown up on amnio.

So even having all of the prenatal testing come back negative is no guarentee that a child will not have special needs.

[AnnieW625]

But there is more to it than just terminating, right? If you end up being high risk, you might want to know that so you can begin to learn about and prepare for a child with special needs. Personally, I am a numbers person, and I like knowing the probability of issues so I can make decisions and prepare myself and my family.


This topic comes up alot in different forms. Personally I agree with the above - I am a need to know/analytical kind of person and I like knowing as much as I can especially when the test is non-invasive.

:yeahthat: And honestly until you have been through a choice where you have had to make a hard decision like that if being even the littlest bit invasive makes someone feel better then and is better for their mental health then so be it. It's not the choice for everyone, but for some if that little bit helps then so be it.

No one here wants to know how many times I prayed in between finding out that the baby had an ecogenic focile in the heart and potentially a chromosome disorder that my baby would just have managable heart issues, Down Syndrome or a false positive and nothing would be wrong. I even prayed after I had my amnio that nothing would be wrong. I cried or barely ate any food for three days after I got my trisomy 18 diagnosis and nothing prepares you for that ever. As horrible as it sounds a diagnosis at 11 weeks vs. 17 weeks would've made things a lot easier in more ways than one.

[amldaley]

:yeahthat: And honestly until you have been through a choice where you have had to make a hard decision like that if being even the littlest bit invasive makes someone feel better then and is better for their mental health then so be it. It's not the choice for everyone, but for some if that little bit helps then so be it.

No one here wants to know how many times I prayed in between finding out that the baby had an ecogenic focile in the heart and potentially a chromosome disorder that my baby would just have managable heart issues, Down Syndrome or a false positive and nothing would be wrong. I even prayed after I had my amnio that nothing would be wrong. I cried or barely ate any food for three days after I got my trisomy 18 diagnosis and nothing prepares you for that ever. As horrible as it sounds a diagnosis at 11 weeks vs. 17 weeks would've made things a lot easier in more ways than one.

I actually thought about you when I posted the OP this morning. I want you to know how much I appreciate your candor not only to this thread but throughout the board on related topics.

Thank you, all of you, for sharing your stories. To be honest, I had not even thought about the "what-ifs". I am sort of a worrier to begin with, so even results showing elevated risk may drive me to the brink of insanity (short trip). Last time, I don't remember them doing this test but I do remember having to sign something ahead of time of what our "intentions" would be if there was a detection of DS. I signed stating I would not choose to abort for DS (and would feel the same this time). But with so many other factors, I am a little freaked out.

What my intial worry was having SO many U/S (yes, there are some fairly decent studies that link dyslexia, speech delays and other developmental and cognitive issues to frequency and intensity of ultrasounds).

However, I do think that given my other health issues, I would rather know what we are up against as early as possible (though mine is scheduled for the beginning of week 13...)

Again, I really appreciate everyones thoughts and suggestions and feedback. There are so many wonderful and crazy aspects of pregnancy that are easier to share, but knowing I can come back here and re-read your thoughts is helpful to me moving forward in a really significant way. (Let's face it...I may chicken out!)

[pb&j]

What my intial worry was having SO many U/S (yes, there are some fairly decent studies that link dyslexia, speech delays and other developmental and cognitive issues to frequency and intensity of ultrasounds).




Correlation does not imply causation. I think there are many valid medical reasons for the NT scan that far outweigh possible risk.

As for "false" positives, the nuchal fold and other SCREENING tests - in order to find the affected pregnancies, the tests cast a wide net and will also flag normal pregnancies/fetuses. That's how they work. They are NOT diagnostic tests. Any provider who recommends termination based solely on NT results is negligent, IMO. Any provider who doesn't mention termination as a possibility is also not doing the patient a favor. I think there is a big difference between presenting termination as a possibility and urging termination.

My own experience with a baby with a diagnosis that was incompatible with life included multiple providers from genetic counselors, to RNs, to NPs, to OBs, perinatologists, fetal specialists, and surgeons. Not one urged me to terminate. In fact one said outright that he would refuse to treat me should I choose termination, despite the fact that it is legal in my state, and supposedly part of the services provided at the major medical center where he was employed.

Unless you lived it, it's just hearsay.

[amldaley]

Correlation does not imply causation. I think there are many valid medical reasons for the NT scan that far outweigh possible risk.

As for "false" positives, the nuchal fold and other SCREENING tests - in order to find the affected pregnancies, the tests cast a wide net and will also flag normal pregnancies/fetuses. That's how they work. They are NOT diagnostic tests. Any provider who recommends termination based solely on NT results is negligent, IMO. Any provider who doesn't mention termination as a possibility is also not doing the patient a favor. I think there is a big difference between presenting termination as a possibility and urging termination.

My own experience with a baby with a diagnosis that was incompatible with life included multiple providers from genetic counselors, to RNs, to NPs, to OBs, perinatologists, fetal specialists, and surgeons. Not one urged me to terminate. In fact one said outright that he would refuse to treat me should I choose termination, despite the fact that it is legal in my state, and supposedly part of the services provided at the major medical center where he was employed.

Unless you lived it, it's just hearsay.

I am not trying to be rude, so please read this with the kind tone in which it is written. I really don't understand your post.

I DO understand that correlation does not equal causation. But that also does not rule out causation either. It goes both ways.

But the part I don't understand was the rest of your post. I read it as if it was written with an impassioned and slightly defensive tone. Am I reading it incorrectly? Are you defending being put in the position of whether or not to terminate? I only said I would not terminate for Downs Syndrome. I totally agree and think others here pointed out that there are many other things the NT tests for. And I understand that there is a difference when something is diagnosed that is incompatible with life. I don't think this thread was meant to turn in to a "would you, wouldn't you" terminate.

But that said, when you say "Unless you lived it, it's just hearsay", are you saying the pp in this thread don't really know what they would choose if they were in that position?

To that, I would say, be careful what you presume about other people. Just b.c they did not reveal it here in this thread, does not mean they have not been faced with the choice...likely the most difficult decision any woman would ever have to make, before. They just may not have shared it here.

If I have misunderstood your post, please forgive me and please help me understand what you mean.

I understand that this is a screening, but I do feel my concerns are valid, even about the risks of U/S. I am interested in hearing other people's experiences not only in order to help me make a more informed decision but really to help allay my fears.

[pb&j]

I wasn't necessarily responding to you, just to the general tone of other tangents on this thread that imply that someone with a screen positive on the NT would be pressured to terminate. That was not my experience at all, and I think that there's a lot of secondhand info that gets thrown about on threads like these that isn't necessarily the whole picture.

Mostly, I just want people to understand that the NT screen isn't the start of a "cascading intervention," so to speak, of being pressured to terminate. And, I also want people to understand that the NT is a screening test and is NOT diagnostic.

[janine]

I wasn't necessarily responding to you, just to the general tone of other tangents on this thread that imply that someone with a screen positive on the NT would be pressured to terminate. That was not my experience at all, and I think that there's a lot of secondhand info that gets thrown about on threads like these that isn't necessarily the whole picture.

Mostly, I just want people to understand that the NT screen isn't the start of a "cascading intervention," so to speak, of being pressured to terminate. And, I also want people to understand that the NT is a screening test and is NOT diagnostic.

Well said

[amldaley]

I wasn't necessarily responding to you, just to the general tone of other tangents on this thread that imply that someone with a screen positive on the NT would be pressured to terminate. That was not my experience at all, and I think that there's a lot of secondhand info that gets thrown about on threads like these that isn't necessarily the whole picture.

Mostly, I just want people to understand that the NT screen isn't the start of a "cascading intervention," so to speak, of being pressured to terminate. And, I also want people to understand that the NT is a screening test and is NOT diagnostic.

That's fair. And very valid. I did not get the impression from the other posts that there would be pressure to terminate, and I noted that one poster mentioned moving on to CVS after NT. You raise good points. I just did not glean them from your first post. Thanks so much for clarifying! I really do appreciate it and hope others reading this thread for info will see your post.

[Gena]

Correlation does not imply causation. I think there are many valid medical reasons for the NT scan that far outweigh possible risk.

As for "false" positives, the nuchal fold and other SCREENING tests - in order to find the affected pregnancies, the tests cast a wide net and will also flag normal pregnancies/fetuses. That's how they work. They are NOT diagnostic tests. Any provider who recommends termination based solely on NT results is negligent, IMO. Any provider who doesn't mention termination as a possibility is also not doing the patient a favor. I think there is a big difference between presenting termination as a possibility and urging termination.

My own experience with a baby with a diagnosis that was incompatible with life included multiple providers from genetic counselors, to RNs, to NPs, to OBs, perinatologists, fetal specialists, and surgeons. Not one urged me to terminate. In fact one said outright that he would refuse to treat me should I choose termination, despite the fact that it is legal in my state, and supposedly part of the services provided at the major medical center where he was employed.

Unless you lived it, it's just hearsay.


I wasn't necessarily responding to you, just to the general tone of other tangents on this thread that imply that someone with a screen positive on the NT would be pressured to terminate. That was not my experience at all, and I think that there's a lot of secondhand info that gets thrown about on threads like these that isn't necessarily the whole picture.

Mostly, I just want people to understand that the NT screen isn't the start of a "cascading intervention," so to speak, of being pressured to terminate. And, I also want people to understand that the NT is a screening test and is NOT diagnostic.

I think this is directed to me, since I did post about the possibility of feeling pressured to terminate. I did not write that to discourage anyone from having this (or any other test), but as an example of one reason why some people choose not to have prenatal testing.

Ry, I am very sorry for your loss. At the same time I am relieved to know that you were not pressured to terminate. Your experience is different than mine. That does not make my personal experience less relevant or hearsay. We also saw several professionals and sadly, some of them did encourage us to terminate and "start over". Fortunately, we eventually were referred to the perinatologist at the local Catholic hospital, who respected our beliefs. However, not all the pressure to terminate came from professionals. Sometimes the people in your life who you expect will support you through the difficult times fall miserably short of that.

No one person's experience is the "whole picture". That's why it can be helpful to hear the experiences of several different posters.