Edit: Did anyone go straight to CVS? Noninvasive tests: how do they differ?

marijaa333 · September 2014

I've read about Matern21, Panorama, and Harmony and even seen comparison tables but I still don't know how these tests are different. Do they all do the same thing, more or less? Has your doctor recommended one over the others? If i get that far, I'd definitely want the test (and appreciate the senior discount, aka insurance eligibility over 35), but have no trustworthy way to compare between them.

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Since posting this, I did a LOT of primary research, and it seems to me that CVS miscarriage risks are tiny, and the test is diagnostic and covers a much broader range of conditions than the NIPT. We're now considering skipping NIPT altogether and going straight for the CVS, but I need to do a bit more reading about the risks and exactly what results are routinely presented.

Did anyone skip NIPT and go straight to CVS either this time or if you already have kids, last time? If so, what has been your experience with CVS?

jab9371 · September 2014

I was only offered Matern21, but I go to a premier health facility in Dallas, so I feel like this is probably the most least non- evasive most comprehensive test. I got my results in less than a week, and my dr filled out a form for my insurance (BCBS), and it is covered, although I have to meet my deductible first for this one.

Lady2010 · September 2014

My dr's office offered Panorama, and we got results in 10 days (which includes a long / holiday weekend). And my insurance covered it due to my age.

I honestly don't think there is a huge difference in the tests / accuracy. You can always pair it with an NT scan to cover your bases - but I have heard sometimes the NT scan can yield a greater incidence of false positives.

From what I understand, most Dr's offices only offer one test - so you may not have too much of a choice in what test to take.

Good luck!

edited to add: good luck

MsMacual · September 2014

I was offered the Verifi test. I got my results about 10 days after and our insurance paid for the test (or at least that is my assumption b/c I haven't been billed!).

I agree with @Lady2010- I think most offices have one test that they offer.

Tsuga76 · September 2014

I had Materniti21 and I think I got the results in about 5 business days. I agree - it seems they're all basically the same. I think it just depends on what lab(s) your practice uses, and what your insurance covers.

banana2020 · September 2014

They are all very reputable and just "brand names" as far as I have ever read. I don't even know which one I was offered, it came back inconclusive (possibly due to being overweight, possibly because I took it on the very early side of being eligible). I go to a top notch hospital in my state of Massachusetts. I don't think that has anything to do with which brand is offered, quite honestly. I think it may have to do with what test your particular hospital/provider is affiliated with.

harmonicbabe26 · September 2014

I think they all do the same thing. My doc office offered Harmony and we did that one.

marijaa333 · October 2014

Update:

Since opening this thread, I did a LOT of primary research, and it seems to me that CVS miscarriage risks are tiny, and the test is diagnostic and covers a much broader range of conditions than the NIPT. We're now considering skipping NIPT altogether and going straight for the CVS, but I need to do a bit more reading about the risks and exactly what results are routinely presented.

Did anyone skip NIPT and go straight to CVS either this time or if you already have kids, last time? If so, what has been your experience with CVS?

mandyreads · October 2014

I have skipped all tests like that. So I probably not any help

Samuelismomma · October 2014

I had harmony done results in 8 days! The DNA test is 99% accurate. My perintologist is so confident in them if your over 35 he does that before invasive test. There is no difference in the names, it's just basically the lab and where you live. In a few yrs when the cost is down they will most likely be standard.

indianaalum · October 2014

Anyhow, NIPT tests can't be called diagnostiic because they aren't 100 percent, but they are all pretty damn close. Close enough for me to feel comfortable NOT wanting to do an amnio and/or CVS which HAS a risk of miscarriage.

Other than age, is there even a reason for you to want to take those tests? have you been told there is a concern at all? If not, I would absolutely start witha NIPT test. IF that gives a red flag, thgen do tthe CVS or amnio (depends on how far along you are in pregnancy)

marijaa333 · October 2014

Actually, they are bamboo leaves from my friend's garden, and Marija is the slavic spelling of Maria (pronounced almost same, the j is a y sound).

As for the question of why skip NIPT, I'm aware of the general explanations you outlined but wasn't satisfied with the surface advice I was reading so I've dug into the primary research. According to what I've found, the sensitivity, accuracy and breadth of NIPT continue to be inferior to CVS and amnio; also, it seems the miscarriage risk involved in CVS and amnio is grossly overstated (it seems closer to 1 in 1000 than the oft-quoted stat of 1 in 200). Since NIPT is so much more expensive (for now), and yet less informative, I'm weighing the pros and cons.

The best summary of NIPT I've found is this presentation: https://www.multicare.org/file_viewer.php?id=8447 (PDF download link). Slide 32 gives a sense of the range of sensitivities, specificities and no call rates (the short story is that there is much room for improvement!). One of the latest studies of miscarriage rates from CVS and amnio is here https://onlinelibrary.wiley.com/doi/10.1002/uog.14636/abstract It shows a 0.11% chance of miscarriage due to the procedures (very small risk, about 1.1 in 1000).

Anyway, I'm still collecting data and was wondering what experiences people had. Thanks for sharing your perspective.

Samuelismomma · October 2014

I would just like to add. I understand where you are coming from but if you have no family history of certain genetic problems or not from say a certain ethnic back ground, than amnio and cvs is over kill. The reason the DNA only test so many diseases are because they are the most common. Obviously because it's DNA they could test for millions, but again overkill. They take a villa sample and or amnio sample and guess what check the DNA..if you have a certain condition your worried about, the dr can probably specify it on the DNA test too. I knew your name was Maria...lol my H is Albanian:) j is I or y there too..

marijaa333 · October 2014

@Samuelismomma Albanians have some beautiful names! "‌

Samuelismomma · October 2014

@marijaa333‌ thank you!

marijaa333 · October 2014

@Indianaalum I take the part you deleted as an apology - accepted!

By the way I've only been to Indiana once but I'll never forget it. I was in Indianapolis for work and stayed in a hotel that used to be a train station. It felt like being a kid again. My room was an old train car!

Bigboneded · October 2014

I did NIPT exclusively. We had a loss last year due to T21, so wanted to be prepared. After my loss, even a tiny risk is more than I am willing to take.
my research tells me the blood test free fetal dna are as/more accurate for what we needed to know. Also I have di/di twins, so any testing cvs or amnio would require 2 tests, even more risks :-(
If you are doing your own research, and making an informed decision then whatever you decide is best for you should work :-)

sidey1 · October 2014

Hope it's ok to pop back in as a recent grad, I lurk at times because I'm hoping to be back on the board shortly!

I also felt that I wanted a definitive test with my first pregnancy, went straight to CVS, and felt ok with it because I was told the risk was overstated and I had a miscarriage that was a direct result of the CVS 2 weeks later. It isn't 0 risk, and unfortunately even with a 1% risk, someone had to experience a loss to create that statistic. I truly wish I had gotten the NT first and then made a decision about the CVS at that point, I thought I had done all the right things, went to a very reputable Dr., researched the crap out of it, but to this day I can't forgive myself for needlessly going forward with the test and losing my son as a result.

I spoken to several high risk Drs. after the fact and they've all said they have patients lose pregnancies due to this test and amnio, they never recommend it unless there's real indication that something is wrong with the baby, If you have any other questions, please feel free to PM me.

marijaa333 · October 2014

Thank you @Sidey‌ for sharing the story of such a painful experience. I am wondering if you ever got the results of the CVS test and if they were normal. The facility I'm going to has had a very low (1 in 500-600) rate and the incidence cannot be ascribed to the procedure, however they are not pushing one way or another. Hearing your experience certainly gives me pause! If you don't feel comfortable sharing publicly, I will PM you once I get home from work. Thank you so much once again for sharing your story.

sidey1 · October 2014

The results of the test were 100% normal, the testing on my son after the miscarriage also showed he was completely normal. We enjoyed a blissful 6 days with this information, until I started experiencing symptoms consistent with an infection. I ended up delivering my son a week later and had to have an emergency d&c as well. Unfortunately, once an infection kicks in there's not much that can be done to save a pregnancy. Based on the results from the d&c they were able to identify that I had an intrauterine infection.

Because I knew we would TTC again, I sought out the advice of several highly regarded high risk Drs and presented them with all of my medical documentation. They unanimously supported the findings that the CVS was the cause of my miscarriage.

I don't mind sharing my story, right before our procedure the genetic counselor told us, don't worry we think the risk % for this procedure is overstated and not accurate, those words ring in my ears to this day....

marijaa333 · October 2014

Thank you so much, @Sidey! I'm really sorry you went through that. It sounds like they should be prescribing amoxicillin with the test as a minimum precaution.

marijaa333 · October 2014

So, after much research and consulting with a geneticist, I've decided to skip all the screening options and go straight to the CVS. The doctor who will be doing it is very experienced. Further, the practice routinely prescribes antibiotics after the procedure. So, while I know that the risk is definitely there (1 in 200 is the average CVS risk for this hospital), I feel it's about as small as it can get and that it's worth it in our case. I'm sure the choice wouldn't be right for everyone, but wanted to update the thread in case anyone else was going through the same decision-making process.

I'll do my best to make and update after the test too, in a couple of weeks.

marijaa333 · October 2014

Quick update: I had the CVS test today. The procedure itself was only slightly more uncomfortable than having a pap smear, but I was exhausted afterwards (probably from all the emotional agonizing over whether or not to have it in the first place). Doc sent me home with antibiotics and orders to abstain from exercise for two weeks (!!), which is roughly when I'll get the results. Fingers crossed it all goes well.

mdogan29 · October 2014

FX for good results!!

marijaa333 · November 2014

Normal results, and all is well 10 days post-CVS. I haven't had any issues at all so far. Doc did tell me not to go to the gym for two weeks, and I went today (at 10 days) but kept things very light.

Very happy with the choice to skip the diagnostics!