2nd trimester
Second NIPT test
Wewen
Hi everyone,
I'm currently 16 weeks pregnant with our second baby.
On April 5th we had an ultrasound, where the nuchal fold was measured. Everything was fine there. Since I had a miscarriage at 9 weeks during this pregnancy, the gynecologist advised me to have the NIPT test done.
You have to wait 2-3 weeks for the results. This test checks for Down syndrome, Edwards, and Patau. Last night at 9 pm I suddenly got a call from my gynecologist. He had been contacted by a professor in Leuven. Down syndrome and Edwards were fine. But Patau syndrome was unclear. They didn't have enough material to test/ rule it out. This naturally hit me like a bomb. My gynecologist tried to calm me down, saying that according to him nothing was wrong because the ultrasound was fine. He now recommended a 2nd NIPT test, (at the hospital's expense) to retest.
I'm so worried right now and it's another 2-3 weeks wait. Colleagues and friends say that something probably went wrong, which is why they want to retest. I also read online that something goes wrong in 5% of tests and they have to retest.
Has anyone experienced the same and can reassure me? I really hope nothing is wrong with our little one.
I'm currently 16 weeks pregnant with our second baby.
On April 5th we had an ultrasound, where the nuchal fold was measured. Everything was fine there. Since I had a miscarriage at 9 weeks during this pregnancy, the gynecologist advised me to have the NIPT test done.
You have to wait 2-3 weeks for the results. This test checks for Down syndrome, Edwards, and Patau. Last night at 9 pm I suddenly got a call from my gynecologist. He had been contacted by a professor in Leuven. Down syndrome and Edwards were fine. But Patau syndrome was unclear. They didn't have enough material to test/ rule it out. This naturally hit me like a bomb. My gynecologist tried to calm me down, saying that according to him nothing was wrong because the ultrasound was fine. He now recommended a 2nd NIPT test, (at the hospital's expense) to retest.
I'm so worried right now and it's another 2-3 weeks wait. Colleagues and friends say that something probably went wrong, which is why they want to retest. I also read online that something goes wrong in 5% of tests and they have to retest.
Has anyone experienced the same and can reassure me? I really hope nothing is wrong with our little one.
Replies
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Mandy7 #2
I wouldn't get a second NIPT done. If it comes back positive for Patau, it's not 100% certain anyway. I think the midwife said the accuracy lies between 20 and 60%. For certainty, you should have an amniocentesis or a CVS done.
If you really want to know for sure, I'd go for one of those two. Otherwise, you'll just be left in uncertainty, and that doesn't help you at all. Sending you lots of strength
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Wewen started this #3
Hey Mandy,
The braid test wasn't mentioned. It was either amniocentesis (you get immediate results) or a repeat NIPT test. The NIPT test gives 99% certainty, says the gynecologist. He advises against amniocentesis because it increases the risk of miscarriage. And since I already had a miscarriage earlier, I want to avoid that for sure.
So I'll have the second NIPT test done. It'll be three long weeks.
I was just wondering if there were other people who had the same issue but where everything turned out fine in the end. Just something went wrong with the first test. I'm hoping so hard that this is the case for us. -
Mandy7 #4
That's totally your choice. Just wanted to say that if you get a positive NIPT result back, don't panic. It's 99% accurate for a negative result, but a positive result has a much lower accuracy, especially for Patau. So if it comes back positive, don't be too scared. I really hope nothing's wrong! Good luck while you wait. -
Anonymous Guest #5
Hey Mandy,
How did it go for you? I'm in the same situation right now, but for Trisomy 18. Just had the second blood sample taken and waiting for the results.
Greetings -
Mandy7 #6
My amniocentesis also confirmed Down syndrome. I should mention that according to the doctors, the chance of a false positive for trisomy 18 is higher than for trisomy 21. Do you already know when you'll hear something? -
maximus #7
Just experienced the same thing here... did a NIP test in early July, then had to wait 2 weeks, and was already on vacation abroad at that time.. so I was super stressed the whole time and called my mom every day, since they were sending the results by mail, so she would check our mailbox and let me know.. eventually after 2 weeks I got a call from my gynecologist saying that 2 of the 3 tests came back normal, but for the 3rd one (Edwards syndrome) they couldn't check it because there wasn't enough DNA in the blood...
so I had to redo the test when I got back from leave.. so spent the last days of my leave stressing that the tests hadn't worked out.. once I was back home, went straight to the hospital for new tests and another 2 weeks of stress waiting for the results.. finally got the results last week saying everything was fine and I didn't need to worry...
and then to think that I didn't do those tests with my first son, how much stress those tests bring.. -
Lolalietje Guest #8
Hi everyone,
I recently got 2 inconclusive results due to a low fetal fraction. Lots of stress, obviously, and a talk at the hospital. Getting 2 inconclusive results means an increased chance that something is wrong (we were told it's 1 in 12). First, we opted for a specialized ultrasound which luckily came back clear, though not everything can be seen on it. That lowers the chance of something being wrong to 1 in 25 or 1 in 100. Then we had to decide whether to have amniocentesis. After much deliberation, we decided against it. After making that choice, I felt a huge sense of relief; I was so scared that something would go wrong with the procedure for a baby that was actually healthy.. By the way, the risk of the procedure going wrong is lower at 20 weeks (which I already was) than at 16 weeks.. 0.2% instead of 0.3%.
But.. we did go to Belgium (Antwerp) to have the NIPT done again at our own expense (450 euros). They measure differently there than in the Netherlands and require less fetal fraction. Within 3 days we got the results and everything was good!
I realize that not everyone can afford to spend this amount on a test where you don't get a guarantee that it will yield a result, but for me, every cent was worth it. I really want to point out this option to others who might find themselves in the same stressful situation.. because no one ever told me about it and I had to find this option myself through lots of online searching.
To all the girls dealing with uncertainty or bad results: lots of strength!! -
S Guest #9
Hey, I had the NIPT test done on 11/19 and got the news yesterday that it was normal for chromosomes 21 and 13, but they couldn't give a reliable result for 18 (Edwards). I'm going to have the NIPT test done again on Monday because according to the gynecologist, an amniocentesis is only reliable around 18 weeks (I'm almost 13 weeks now). And I'm not looking forward to waiting more than 4 weeks... What a stress... I'm hoping everything will be fine but I'm afraid...
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