I've written before about advocating for myself, as well as the consequences of not advocating hard enough. We got another example recently.
I am pregnant with twins. I want to do NIPT testing, which is testing that looks at fetal DNA in my blood stream to determine if key chromosomes have the correct count. Two years ago, the genetic counselor told me that my insurance wouldn't approve NIPT for twins, so our only options were a CVS or amnio or NT screen/quad screen. I called my insurance back then, and verified that they would have covered the NIPT for twins, but because of all of our losses and my inversion, I thought the CVS was the better idea, so that's what we did. Then we lost the girls and I spent the better part of a year being told it was due to the CVS. That turned out to be bullshit, since the cause was actually my cervix, but let's blame the test anyhow, ok, it'll make me feel worse?
Ahem. Apparently some lingering guilt/anger over that one!
Anyhow, I don't want to do a CVS this time but with the TAC, I do want to know the babies' status with as much precision as I can, before 13 weeks. There are a few companies who offer NIPT, but only one claims to be able to analyze twins separately. That's Natera, with their Panorama test. The U of M typically uses the competition, Progenity. I did my research up front, and while I haven't read the tech studies, Natera claims it does analyze twins separately, checks zygosity, and can do things like give genders for each. Progenity does not claim to do that.
We saw the genetic counselor at 7 weeks. She told us the same thing we heard two years ago: Progenity is what they use. You can get false positives and it can cause worries. It doesn't work well with twins. It might not be covered by insurance.
I asked very specifically about Panorama for twins. The counselor let out the biggest sigh I've ever heard and acknowledged that Panorama does the test differently, which might actually be better for twins. And she said she could order it, but don't expect insurance to cover it (I checked, they will). We asked her what the sigh was for and she never really answered, but she did agree to order the Panorama if there were two heartbeats at 10 weeks. She seemed to think we were troublemakers, pushing against what she'd normally do.
So, we're getting the right test because I did my own research, knew what I wanted, and asked. It shouldn't be that hard, but it was and it's done. It's given me still more reinforcement on the importance of keeping track of everything yourself and advocating.
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ReplyDeleteI insisted on the Panorama test also, because of this study: https://www.necir.org/2014/12/12/unusual-experiment-raises-concerns-prenatal-testing-labs/ (the researchers sent bloodwork from women who aren't pregnant and a bunch of other tests reported a healthy female fetus. Natara's Panorama correctly reported not enough fetal sample to determine pregnancy). It's correctly predicted gender and low probability of disabilities in one child, and so far seems to indicate my next is fine (which matches the pgs testing done on the embryo prior to implantation - I'm currently pregnant with an IVF baby). If you have any difficulties with this MFM center, just go to another one for your NIPT testing (our local hospital has a MFM center, and it's just one visit for this testing). Or you can contact Panorama directly. When these tests were first introduced, you could ask them which doctors were providing them (they're much more commonly given now than when I was pregnant last time with my now 3.5 year old). Best of luck.
ReplyDeleteThat's a fantastic study. I had seen it summarized somewhere, but hadn't hunted down the specifics. Hopefully we won't have any trouble on Thursday when it comes time for the blood draw, but if we do, I'll call Natera directly. So much effort for something that shouldn't be this hard!
DeleteYeah, call the clinic and ask to speak to the manager. Tell the manager what you encountered. Give the same story to your OB and to your insurance. This person needs to be pulled off of rounds and re-educated about bedside manner. It is COMPLETELY inappropriate that she behaved this way.
ReplyDeleteYou are right about Panorama. It’s a good test and there’s a reason their competitors can’t touch them. The fact that U of M has a preferred provider shouldn’t matter given you 1) are pregnant with twins and 2) your history. I’m so glad you are advocating for yourself and your family. Because it’s clear the medical system won’t.
The part that still bothers me is that she wouldn't explain the sigh. Does she really think Panoramoa is worse? Was it just going to be a paperwork headache for her? What was her real concern with it? Once she acknowledge it might be better for twins, I felt good about the choice, but man, frustrating!
DeleteI'm curious what NIPT test was performed when I was pregnant with twins 3 years ago. They recommended it and insurance covered it since I was over 35. We got good results, but they said they would not be able to distinguish results between the babies. They were able to tell me the gender correctly because I had twin girls, but they said if XY chromosomes were present they wouldn't be able to tell if it was 1 or 2 boys until the ultrasound at 20 weeks. I had two friends who had false positive results for Turner's Syndrome from NIPT testing. They both had an amniocentesis with normal results and had healthy babies, but they were put through the emotional wringer. They don't publish much about the false positive rates which is very frustrating. I'm glad you have done the research and advocated for yourself. I just blindly accepted what tests the OB recommended. I hope you continue to get good news and test results throughout your pregnancy.
ReplyDeleteGood for you for advocating for yourself and sticking your grounds. Best of luck on your pregnancy!
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