Nuchal translucency screening?

[amldaley]

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.