Scared! Received positive result on Panorama

candaceandmichael2012 · October 2013

Hello all,

I could use any advice right now. My husband and I received a phone call from the doctor today that our panorama blood work came back with a high risk the baby will have down's syndrome. Trisomy 21 is at high risk. We had the blood work done at 9 weeks and it was to check the chromosomes of the baby and they called today say something is wrong. I have research with alot of websites saying their is chances of false positives. Any experience out there with this? Any prayers or help anyone can provide would be ever so grateful. We do not have any in either of our families with this and I am 29. We are just in complete shock! We go to the Dr tomorrow and discuss everything I guess from here just not even sure what to do, we feel so lost!

MercyGale · October 2013

I have never had these tests done, I opted out. I read stats somewhere, cant remember our 1st was 4 years ago, but anyways, I read that those test can be highly inaccurate. be positive love. (hugs)

jjh471 · October 2013

My husband's brother and his wife had the test done and it can back positive they went back and re did it a few weeks later I believe and it was negative. Their daughter is fine she is 4 now. I think that they can come back with false positives

candaceandmichael2012 · October 2013

Thank you! That was very helpful!

id012 · October 2013

A friend of mine had a positive too. She went through a ton of test and the chances were like 1 out of 3 that he had down syndrome. He is not 2 and is completely fine.

NYJodway · October 2013

I remember reading in the Dr. Sears Pregnancy Book that there are definitely false positives, and that the reason some parents opt out is because of unnecessary worry.

Avion22 · October 2013

You should be talking to your doctor or a genetic counselor.

These screening tools give you ODDS. You say "high risk" -- what does this mean in terms of numbers? 1 in 50? 1 in 20? It's not really a "positive" in that it's not saying for sure that there is anything wrong with the baby. There is still a really really high probability of everything being completely normal.

Screenings like NT, Panorama, Harmony, etc are to "screen" people to see who is at the highest risk. Then those patients have the option of doing an actual diagnostic test like CVS or amniocentesis, which is probably going to be your next step. These are actual diagnostic tests that look at the baby's actual chromosomes. They do carry some risk of miscarriage (how high a risk depends on what study you read, but anywhere from 1 in 100 to 1 in 1600), which is why they aren't offered to everyone off the bat.

Seriously, you should ask to speak to a genetic counselor to talk about your testing options from here, and to help explain what these different results mean.

alm288 · October 2013

I haven't had my first appt yet, so I don't know myself. My sister's friend had the same thing happen. They went for genetic counseling - highly recommend!!! In the end they decided they would have the baby and see. They had a perfect little girl - 100% healthy. Good luck to you!

candaceandmichael2012 · October 2013

Thank you so much everyone! I am reading this is what happens with alot of people. This is SO HELPFUL! I feel much better and hope that things all work out. Keep you posted. Thank you again!!!

pigtails1031777 · October 2013

Is it the maternal21 test?
If so it shouldn't be done till after 10 weeks.
However these test are pretty accurate however I'm hoping it's was just to early to test

candaceandmichael2012 · October 2013

No, it was the panorama test which can be done at 9 weeks my dr office said they just started these tests 9 months ago.

IBackBevo · October 2013

There was a woman on fertility friend (another website/forum) who said her doctor had three sets of false positives within a very short period of time on that test (or one that was similar) and he quit recommending it because of that. I don't know what a false positive consisted of...

IBackBevo · October 2013

I tried to modify my comment above, but I cannot. It may have been the harmony test instead of the one you had. Whichever one it was, he had enough patients test positive when they were, in fact, negative that he quit recommending the test.

IBackBevo · October 2013

And I agree with PP. This is not like the NT scan. Here is a link:https://www.panoramatest.com/snp-testing-next-generation-of-NIPT

srcr2011 · October 2013

From what I remember, they have more false positives than actual positives. Defiantly not worth the money. We chose not to test at all when I was pregnant with my son and I will not do it again with this pregnancy as well. T&P that all works out for you!

spinsoffresonance · October 2013

I'm sorry you're going through this. I want to say that my DD is 10months old and the cell free fetal DNA tests such as the Panorama weren't yet available when I was pregnant. So all the PP that are telling you they had a positive test but their 2,3,4 year old turned out just fine are referring to the quad/NT screening not fetal DNA tests. The Panorama test is over 99% accurate at diagnosing Down syndrome. You should talk to a genetic counselor. Good luck.

vszapp · October 2013

Yes, sorry, but another opinion that the cell free DNA tests are highly accurate (based upon published data). You need to speak to an expert.

AllieSchur · October 2013

kitchencolors said:

Huge hugs. I had a prenatal diagnosis of Ds with my daughter when I was 26. It just happens sometimes. It's so incredibly hard. PM me if you want to talk discuss Ds itself or if you just want to vent to someone who has been there. The Special Needs board here has a few Ds moms and there are lots of Ds specific boards on the baby center website as well.

You are getting so much misleading information in this post. Panorama is NOT like an NT scan/1st Tri bloodwork. It is significantly more accurate and does not have nearly the same "false positive" rate. The company that makes it reports over 99% accuracy. While some people still call these blood tests (Panorama, Verify, MaterniT21 etc.) screening tests, they are incredibly close in accuracy to a diagnostic test (CVS/amnio), and at least in the Ds community seem to be considered diagnostic. These are new tests! People who had experience five years ago with false positive screens on NT scans are talking about something completely different. They really do not give false positives very often - like 1/10,000 ish for false positives.

I personally don't plan to have an amnio or CVS if our test comes up positive. I feel like these tests are accurate enough that I'm okay with the results. If I got positive T13 or T18 results and was considering termination, I would confirm with an amnio or CVS first, but for T21 I would just treat it as a diagnosis. That's me, though. Not everyone. I totally get that everyone chooses what works for them. FWIW, I had an amnio with DD and the procedure itself wasn't bad. We got the rapid results in two days, full results in two weeks.

I hope your appointment today goes well. We found a genetic counselor to be very helpful when we received our diagnosis. Seriously, I'm here if you want to talk.

This!!!!! I was just at Maternal Fetal Medicine today and she explained the difference, the test you had is not the normal first tri screen, those give you a general risk number, the test you had is a different test and has a different outcome. Hugs you are going through this, hope your doctor is able to offer some help tomorrow.

rowanthefrog · October 2013

Unfortunately i have to disagree with most of the PPs. You did not have the AFP test or the Quad screen (which does have a high incidence of false positives.) From what I'm reading, Panorama is similar to MaterniT21/Harmony which looks at actual fetal DNA and chromosomes and is a very new test (no one's mom took this test.) Those tests have a 99% accuracy rate. I'm just going to offer you big hugs and hope that your conversation goes well with your doctor tomorrow.

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