Looking for some advice on getting the NT scan...

JCBP2014 · September 2015

This is my first pregnancy and I'm at the point where some decisions on prenatal testing need to be made. We were told about the nuchal translucency scan to check the risk of down syndrome. I don't want to get this test because I have a family member who had this testing done, she was told she was at risk, she ended up having further testing, being told she's even more at risk. It ruined her whole pregnancy, then she gave birth to a beautiful and completely healthy baby boy. I don't want to go through that, but at the same time I'd like to know that I'm not at risk. My husband wants every test available, because he wants to know everything, but I've managed to convince him otherwise. But we went to our first appointment with the Dr. yesterday and he almost made me feel bad about my decision. I'm having a bit of anxiety, and I'm not really sure what my decision is now. I do know that I need to make up my mind very soon. Any advice?

rschenck14 · September 2015

Hi,
I can only share my experience with you. I had an NT Scan on my first pregnancy and we were told that our baby was going to have issues. We spoke with a genetic counselor (which I would highly recommend if you decide to move forward with testing). They gave us pros and cons of moving forward with a CVS which is ultimately what we decided to do because we wanted to know. We had the test completed and we were told the baby was perfectly healthy. CVS are fairly accurate I think 99.5% or more, so yes there is always a chance. Now we went on to have a 20 week scan and there were markers that indicated the baby would have down syndrome there, but because we had the CVS, that was not true. From what I know and I am not an expert, the NT Scan and the 20 week scans are not diagnostic tests. They just look for the baby to measure within certain ranges and to not exhibit certain markers. If for some reason there is indicators, then doctors will recommend further testing, like a CVS or Amniocentesis, which are optional. There are risks for miscarriage for CVS or Amino. I don't regret doing the CVS because it gave me some piece of mind, but in the end I was still worried and did not have the reassurance I needed until she was out and we could see her.

We are now pregnant with number 2 and we will do an NT Scan, but we are much more educated going in this time. Additionally if we don't like the results, they do have blood tests that can offer further screening. And if we have to we will do another CVS, but we are opting to do less invasive if possible.

Ultimately there is nothing that is 100% reassuring (in my opinion) and you have to do whats best for you and your family. We know a lot of people that never do the testing because they just don't want to know and they would never consider terminating a pregnancy. Do whats best for you guys. Good Luck!

rebelone · September 2015

Only my opinion, since it is solely your choice to whether to have it done or not: sometimes these tests cause more worry than they're worth. Don't allow others to sway your decision if you choose not to have it done. Here's something to think about: would the results change things with having the baby? I think the anatomy scan at 20 weeks and I'm not sure if that's optional as well, but I know of women who do skip the NT scan.

rebelone · September 2015

I want to further add that today, there are noninvasive tests taken through blood that are also just as accurate that can also identify indicators such as T13,18, and 21

Brandi81012 · September 2015

Do not let anyone away your decision, it is solely you and your SO choice. We chose not to do the NT scan with our DD and we will do the same with #2. Our reasoning was even if the test showed markers it would not change our decision on going through with the pregnancy. The choice is yours!

ashlee113085 · September 2015

I personally think it's the wrong question to ask if the test would change anything about the baby. I did the NT and the quad screening for NTDs with my first pregnancy. The NT came back very low risk, but my quad screening came back with very high risk for NTD. Some defects are very important to know sooner rather than later. For instance, even if you wouldn't terminate for down's or spina Bifida, down's comes with heart issues that may require routine monitoring throughout your pregnancy and spina bifida has options for prenatal surgery that can only be done prior to 26 weeks and you have to go through a process to get accepted for the surgery as it won't work for all cases. And since its a specialized surgery you may need to relocate as only a few hospitals perform the surgery. While I know these things can be stressful, the more knowledge you have the better, IMO. After going through all that and having my first baby diagnosed with Spina Bifida at 17 weeks, it gave us time to prepare. Unfortunately due to the severity of the other defects with my first, we lost her at 18.5 weeks. it's more of a health issue for you and baby than whether you would terminate the pregnancy.

JCBP2014 · September 2015

@ashlee113085 In no way did I ever say that I would terminate my pregnancy based on the results of any test! I would never do such a thing! I was just looking for opinion from other mothers based on their personal experience.

Just to be clear, I would not terminate at all, no matter what the test results are.

NachosAndPeaches · September 2015

@ashlee113085 gave amazing examples. The NT scan is very important regardless of if you would terminate or not. That should have nothing to do with your decision. Also the NT scan just checks for markers and likelihood. It's not an actual test for downs and other trisomys. But it can tell you if there are other things going on that would affect decisions in pregnancy care (like leading to extra monitoring in third tri that could save baby's life). I hate hearing people say they don't get this test because they wouldn't terminate. Read the literature and learn that there are other things it can tell you that could save a life by delivering at a proper hospital or getting proper monitoring or even in rare cases, get prenatal surgeries etc.

TheBorg7of9 · September 2015

JCBP2014 said:
@ashlee113085 In no way did I ever say that I would terminate my pregnancy based on the results of any test! I would never do such a thing! I was just looking for opinion from other mothers based on their personal experience.

I believe her point was that there's more to consider than termination. Many people say they don't want to get the tests because they wouldn't terminate no matter what. But that is not the only reason to get these tests. Many diagnoses would require monitoring or treatment during pregnancy.

I also want to point out that there are fates worse than death. You may reconsider your position if you found out your baby was suffering in the womb or would suffer greatly after being born and then die a painful death. I'm just saying that I can't say what I would or wouldn't do unless I was in that position and considered all the facts.

ashlee113085 · September 2015

@JCBP2014 I definitely wasn't saying that you would or wouldn't. I am just pointing out that many of the previous posters mentioned only do it if it would change the outcome of the pregnancy. But I just wanted to point out that there's actually a lot more to consider than that. As I was the 1 in 1000 who had a pregnancy with spina bifida I know all too well the other things to consider that sometimes people just assume will never happen to them, but the reality is it could happen unfortunately. I had no family history of any defects in my family, but I am so glad that I did the test. Ultimately, though, it's definitely your choice. I just feel the need to share my experience just in case. I certainly never thought my first pregnancy would end up the way it did, but I'm glad I had the diagnosis instead of being blindsided at my 20 week scan.

Shrmoss01 · September 2015

We personally chose to not do any testing other than the 20 week anatomy scan. My husbands cousin was born with Omphalocele along with other health problems and no tests hinted at the problem until they saw him outside the womb. Like others said there are benefits to finding out about anomalies but we felt it wouldn't change our decision to have a baby and being high-risk already we chose to bond and enjoy the pregnancy. Like others said it is ONLY you and SO choice and I believe even as first time parents you will make the right choice for your family : ) good luck

jpb7712 · September 2015

Thank you so much for posting this. I'm also considering whether or not to do the NT and this has helped so much. We too wouldn't terminate the pregnancy, and I do need to read more about what the NT scan will look for and how it can keep me and baby safe throughout pregnancy. Any info is welcome with open arms!

sbellendier · September 2015

Honestly I think the OBS are in contract with prenatal testing companies and they have to suggest everyone to get the testing just to keep up the contract. I personally didn't do any of those with my first two pregnancies, and originally I didn't plan to with this pregnancy but they told me I could find out the gender early and I opted to only to find out the gender, because summer baby items are on sale now and they won't be in October when I reach 20 weeks for the US. Still waiting on my results from the progenity blood test but I will find out the gender and take everything else with a grain of salt. I have also heard LOTS of false positive results with those early screenings....I just trust that everything will work out the way it's supposed to, no need to worry.

RoseShadow873 · September 2015

I'm not planning to do it because my insurance won't pay for it and I don't believe I would be high risk, but it is a hard decision and I'm still not totally sure I made the correct one. This is so stressful but I appreciate seeing everyone's opinions on the matter.

AnnikaD20 · September 2015

I did it with my first, and am planning to do it again with this pregnancy. I like having the extra info, and I tend to worry more in the absence of answers. And if something was to come up, having plenty of time to plan and research and prepare would be so helpful to me.

Other people are happier not knowing, and I can respect that.

skuleecat · September 2015

I just had mine yesterday and all looked great! For me it eased all my fears. It really wasn't presented as a choice for us, my dr just said we needed to go have this screening done, and I'm really happy we did. Anything to make this journey less stressful or anxious I'm ready to do.

NachosAndPeaches · September 2015

I have a genuine question for those that have said they elected not to do the NT because they wouldn't terminate. Why did you do the anatomy scan?

runlong3 · September 2015

At some point you really should have a scan to see if there is anything wrong with the baby, regardless of whether or not you would terminate. There are some issues that have much better outcomes at birth if they're known ahead of time - such as heart defects and other abnormalities. It also gives parents time to prepare if there is something wrong. The anatomy scan is also a much much more thorough scan than the NT scan. It looks at every single part of the baby - the NT only looks at a select few. While all scans are optional, the anatomy scan is really super super important to do.

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