Anything positive about NT/NITP testing?

eam9

Hi everyone-

I have read a lot of posts on the various boards about people having a lot of anxiety over the NT scan, NITP testing, and how the results terrify people by telling them their chances of having a child with a chromosomal abnormailty. I am scheduled to have my tests done in a few weeks (I am 38 and this is my second pregnancy after a miscarriage). I guess what my question is---are these tests only really effective when followed up by a CVS or amnio (both of which I don't want to do). We would want to be able to prepare for a child with special needs, but at the same time, are these tests just really anxiety inducing and is it worth it? I have read so many negative things about these tests....does anyone have anything positive to share about their experience?

Thank you!

jerseygirl227

I did the MaterniTI test, and was glad I did.  And I decided on that test because I didn't want to do the more invasive procedures.  Even though the risks of miscarriage are considered low with the amnio, I didn't want to take that chance.  

Was I worried for those two weeks while I waited for those results?  Sure was!  But, I have pretty much been worried on and off throughout my whole pregnancy, lol.  My results came back with extremely low chance (1 in 10,000) of there being a problem.

I think it was worth it.  I would do it again.

niknak1208

It's a personal decision I think.  I never have any of that testing done.  I haven't had it done with any of my pregnancies.  I have been pregnant 6 times. I've had 2 early losses around 6 weeks. 1 late loss at 20 weeks. I still don't have them done.  For me, they are just anxiety inducing and I already have plenty of anxiety.  Unless the doctor was really concerned about something, I would probably never do that. But that's just me. 

LorMor

Don't forget the chance of an abnormality is really low. So MOST people would have a good result with the test. With my previous pregnancy, I really enjoyed the NT scan because it was a much higher quality scan than the one the OB uses. So we got to see so much detail, and it was a really exciting scan, once the scary stuff was out of the way.

On a forum like this, you're likely to hear the horror stories more than the good stories, but in real life, good results are a lot more common than bad ones. And there are non-invasive follow-up tests that can be done if necessary.

KaLikeAWind

I also did not do the genetic abnormality testing. My reasoning was this - what am I going to do about it should I get a elevated result? Other than termination, there's nothing I CAN do. And even then, the results are just odds. So then I have ask myrself under what odds I would make that kind of decision? We did it this way - we did the anatomy scan and should something had looked severely off, we would have discussed the testing further with our doc. But it looked fine. So no testing. Honestly, I found it to be less stressful, not worrying about percentages of abnormalities.

eam9

Thank you everyone-I appreciate hearing from everyone's experiences. Every time I think I am starting to relax in pregnancy, there is something new to worry about.

ewenner

It is definitely a personal decision.  I wouldn't say that the tests are not "effective" without CVS or amnio.  The NT and NIPT tests simply give you the odds that your baby has a chromosomal abnormality.  If the results show a high risk, then your OB may recommend following up with the CVS or amnio, but if the results show low risk, the invasive tests probably won't be needed.  

We did both the NT scan and the MaterniT21 NIPT, and I am very glad we did.  It did not cause us extra anxiety, but that probably depends on your personality and you own medical history.  Our risk came back very low, which gives us peace of mind, since although the NIPT is considered a screening, it's 99% accurate.  Whatever you decide to do, best wishes.

jerseygirl227

eam9 said:

Thank you everyone-I appreciate hearing from everyone's experiences. Every time I think I am starting to relax in pregnancy, there is something new to worry about.

I understand that!

HWKI

I did the Natera test and since it came back as low risk for all the conditions it screens for I found it very reassuring (and got to find out LO's gender at 10 wks). My doctor said that test now "trumps" the NT scan, so we didn't bother with the NT scan (my doctor does a quick peek ultrasound each visit, but if yours doesn't and you are anxious to see baby that is a plus of the NT. I had an NT with 1st child and had a positive experience.). We had planned to make a decision regarding further testing if we had come back high risk. We knew we would proceed with the pregnancy regardless of the results, so it was more just to be prepared in case there was an issue. I would rather have the chance to grieve/come to terms now, so I could be happy/prepared at the birth. Ask yourself if knowing the information will help you feel more prepared/ in control or give you more stress.

PlainJane8350

We didn't have any problems. We had a loss, too, Trisomy 13, so wanted every genetic test possible this go 'round. We see a perinatalogist and she never mentioned odds, just did each test and gave us negative (thank God) results. With negative results, she hadn't recommended amnio. I did want CVS, though and she advised us to wait and see what the ultrasound looked like and do Materna Plus. We did the ultrasound and Materna the same day, with the other tests as recommended.

LMJL

After talking to the genetic counselor last week, I know what you mean about getting worried. I'm 37 & had a MC with my first pregnancy at 6 week in January. My husband & I were worried about our chances for chromosomal abnormalities as I am AMA & he is almost 42 which actually puts our risk level up to above 1 in 130, not so low to us. While we decided not to continue with the pregnancy, many parents want to know ahead of time, so they can properly prepare to care for the child, etc. We decided to do the regular old school screens, NT test, etc & take an NIPT test (my OB's office uses Harmony, but the counselor said they are all the same basically.) They only test for the 3 most common chromosomal abnormalities, (there are a LOT more) but they are 99-97% effective at detecting those. If that comes back positive or unclear, we will opt for a CVS test. I may still opt for an amnio later on (16 weeks, I believe.) To reassure us about the other possible abnormalities that can occur. But I opted not to do the CVS test right out of the gate b/c of the miscarriage risks. I was told 1/100 for a CVS test, as opposed to 1/1000 for an amnio. This info was from a family friend who is a general practitioner & another AMA mom. She was the one who finally advised me to skip the CVS unless something was wrong, she is a smart lady & I really trust her opinion. I only wish she lived in my city so she could be my Doc! Hope that info helps you some. It was a harrowing decision for me to make & I felt really alone making it. Best of luck.

MaryJo&Heath

I am 39. We were glad to get our results from NT and fetal DNA. Now I feel more relaxed. It was really nice to find out gender from the testing too.

Teenie16

I am 41 and we decided to do the MaterniT21 test. Ours came back positive for Trisomy21. So we decided to have a CVS, but due to the position of my cervix & location of the placenta the dr couldn't do the test. So we had the NT scan which came back normal. We're supposed to have an amnio tomorrow which we have decided against. None of these tests change how we plan on proceeding with this pregnancy but since my BF has a brother with Down Syndrome we wanted to be prepared. I know there are other screening test we can do along the way that we may do but we've decided to accept the fact that we won't know for sure till our little guy shows up. 

It is a personal decision and everyone is different. And it has taken me a little bit to be ok with not knowing. And no one can decide that for you. 

Good luck to you. I hope everything turns out ok.

eam9

Thank you everyone for sharing. All of these tests can be overwhelming! We have the NT scan tomorrow. Fingers crossed!

PlainJane8350

Good luck!

*shira*

We were told our chances of having a baby with T21 were 1:52 after 2nd trimester screens. I was very grateful for NIPT because it allowed us to have a better estimation without the risks of amnio. The NIPT came back positive for T21 and that was enough certainty for us to begin preparing. I was very glad we knew before she was born so that we could learn more about Down Syndrome and reach out to local support groups.

momgfpa

This is my first time posting, and I felt compelled to reply. I'm 43 years old, 20 weeks now. I had the maternal serum screening at 17 weeks. The results were 1:10 for trisomy 18.,needless to say, I was devastated but not hopeless. I spoke with a genetic counselor and she suggested NIPT based on its accuracy. We scheduled the Panorama for the next day. The next week was almost unbearable. On the verge of a panic attack the whole time, I struggled with hoping for a miracle while coming to terms with the fact that my son had T18. Now, the good news, six days later I got the call, no triaomy 18, or any other condition!!! I was so elated that I had to call back and confirm what she had just told me. 1:10,000 for all screened conditions. My advise is to have the NIPT .yes, waiting for the results is almost unbearable, but , for me, the wait was nothing in comparison to know

ing my son is doing great!! Good luck with what ever decision you make..

sameeha32

I had it done and found out i was having a girl and everything was alright. I am 34 soon to be 35 in a month and before now i would have never taken any test because me and my husband said we would except whatever god has in store for us.

jillcc

I got a positive NIPTs test for Turners Syndrome. Two wasted months later, we found out it was a false positive through Amnio. Wish I never took it. So much stress and anxiety for nothing to say the least.