Genetic Testing

chloe97 · October 2018

It just occurred to me that we have some ladies coming close to the end of the first trimester already!

Some of us have/will be getting NT scans/NIPT done, here's a place to share our results!

chucksmom15 · October 2018

We should know by Halloween!! I’ll be relieved to see that this LO is healthy and excited to see what we are having.

chucksmom15 · October 2018

We should know by Halloween!! I’ll be relieved to see that this LO is healthy and excited to see what we are having.

chucksmom15 · October 2018

We should know by Halloween!! I’ll be relieved to see that this LO is healthy and excited to see what we are having.

chucksmom15 · October 2018

We should know by Halloween!! I’ll be relieved to see that this LO is healthy and excited to see what we are having.

chucksmom15 · October 2018

We should know by Halloween!! I’ll be relieved to see that this LO is healthy and excited to see what we are having.

chucksmom15 · October 2018

Sorry ladies. App is acting up. Did not mean to post 5 times.

psychobutthead · October 2018

I go next month for my NT scan and blood work. I can't remember its either the 5th or 7th of next month.

bgdwg · October 2018

My first appointment with the specialist is the 15th. Spinal muscular atrophy and a heart condition run in my husband's family. Since DH has the heart condition, we would just rather know and be prepared than not know!

mrskoz428 · October 2018

I am doing an NT ultrasound on November 2 followed by an appointment with my CNM to listen to the heartbeat.

kbelly777 · October 2018

My lab appointment for NIPT labs is 10/18. Anyone know how long it usually takes to get results back?

chloe97 · October 2018

@kbelly777 It took 2.5 weeks for my Panorama to come back and it was agony! I have heard of people getting results back as soon as 1 week through!

aels12 · October 2018

Is anyone low risk, tests not covered by insurance, still thinking about doing any testing? I didn’t with my first but I’m considering it this time, still no risk factors.

mrskoz428 · October 2018

@aels12 I haven’t reached out to insurance yet so I’m not 100% sure if it will be covered. I do know my NT ultrasound is covered once I hit my deductible, which we have saved in a “baby” savings account right now. I have an appointment scheduled with a geneticist but will cancel it if the other tests aren’t covered.

anonellis · October 2018

@aels12 my insurance didn’t cover the panorama (or materiti21 or whatever — can’t remember which one) for my last pregnancy. But I called my insurance in advance and it turned out I only had to pay $250. I know that’s still a lot, but I had heard it would be, like, thousands. This time I’m over 35 so I think it will be covered.

DuchessOfCambridge · October 2018

@aels12 I’m not because I’m comfortable with how things went with #1 (NT and seq screening came back lowest risk possible) so I’m sticking with that again because insurance doesn’t cover any of it and we can’t afford additional OOP expenses. Obviously will do further testing if any red flags show up on NT/SS. Is there any particular reason you’re wanting to do it this time around? I know it’s more stressful when you already have one baby because it’ll impact their lives ❤️

aels12 · October 2018

@DuchessOfCambridge no real reason, I mean I’m a couple years older than with ds, still only 29 though. Mostly just wanting to be as informed as possible, but also worried it’s overkill.

imrachellea · October 2018

@aels12 We have to check with insurance to make sure it's covered, but I'm low risk (with two previous healthy pregnancies) and have it scheduled for 11/15. To be honest, is mostly just so I have an excuse for a longer ultrasound. Results wouldn't change anything except for us to be prepared if there was an issue. But we would take no other action.

journey721 · October 2018

We are doing the genetic testing because we lost a baby due to Trisomy 13. Insurance will cover it because of that- I’m 30 so under 35 so i wasn’t sure if they would. Can’t hurt to be informed!

beccaneu · October 2018

I’m not sure if I’m covered by insurance for the testing or not but I definitely plan on doing it regardless.

I’m 34 which doesn’t count as AMA as far as insurance is concerned, but still feels close enough that I’m concerned. Plus my husband had an uncle who had Downs and I had a prior loss due to chromosomal abnormalities.

flutterflutter · October 2018

@aels12 I definitely know where you are coming from. My plan with my first pregnancy was just to do all of the recommended tests and then base any further decisions on those tests. Because the NT screening and blood work and such were ok, it was not recommended that I have anything further done.

This time around though, I'm a geriat...I mean I am advanced maternal age, so I'm doing allllll the things because I can. I have my blood work for genetic testing done next week!! eeeeeeek!!

DuchessOfCambridge · October 2018

@aels12 are the NT and sequential screen covered by insurance? If not I would definitely do those because like you said, it’s good to be prepared for what’s ahead. At this point I don’t need to do anything beyond that, a few weeks doesn’t make a huge difference to me personally...I might feel differently if I was planning to terminate, because then I’d want to know as early as possible.

willmisspumpkinbeer · October 2018

As far as insurance coverage goes... with my last pregnancy, the blood test wasn’t covered (would have cost like 2k). I was told you had to be 35 or high risk.

This go-around I’m about to turn 34... figured I wouldn’t be covered but the doctor said that over the past 2/3 years, there’s a lot more competition on the market and companies doing these tests, that they are charging a lot less and insurances are covering more. She said the most she’s heard of someone paying oop is like 250/300 dollars. Seems worth it to me so I’m going in for my blood test 10/15 and will do a surprise “I’m pregnant”/ sex reveal with my close family at the end of the month.

chloe97 · October 2018

For some reason my insurance didn’t cover the test with DD even though I was 37 and had a prior chromosomal abnormality. I think it had to do with the way Panorama billed them. I got a letter in the mail from my insurance company when DD was 3 months old explaining this- so well after the test. I never got a bill. A friend I work with had the same issue (so it may have been my insurance). Anyway, this is going to sound sinister, but it’s not competition that is keeping them from charging more than a few hundred bucks, they want your genetic data.

Im not a science person, so I won’t explain it right but these companies need as many cases as possible to build up their data sets so that they can prove statistical significance. Fetal testing is just a tip of the iceberg for them as they will move into other DNA-type testing for cancer, etc.

gabadoo · October 2018

@aels12 @beccaneu @willmisspumpkinbeer, I just did the standard NT and 1st tri (plus 2nd tri) blood work for my last 2 pregnancies, when I was 31 and 34. Had any red flags popped up, I may have requested either NIPT or an amnio depending on screening results and my OB’s recommendations. It does seem worth $250/300 to have some reassurance if insurance doesn’t cover the NIPT, but I’d caution all of you to remember that this is still considered a SCREENING test and not a diagnostic test. It will give you a risk profile for trisomies and some sex chromosome related disorders based on age, but if anything comes up, formal diagnosis will likely require more invasive testing, such as an amnio. In that way, it acts just like the NT plus supportive blood work, but with a slightly higher certainty of your risk profile. I’ll be 36 when this little nugget is born, so insurance will likely cover NIPT for me this time, as well as the routine screens. I guess one of the added benefits of being “elderly” (haha, love being made to feel old!) is that the NIPT will tell us the sex a whole 1.5 months before we’d normally know. We plan to announce to extended family and friends at Thanksgiving this year, so we can add a sex-related flare to this announcement as opposed to my last 2 pregnancies. Goid luck to all getting testing so soon...I’m at the tail end of this BMB, so I’ll be rooting for you all while I wait semi-patiently for my own appointments and testing!

willmisspumpkinbeer · October 2018

@chloe97 wow i didn’t even think of it like that. I had two dna kits (for fun) just sitting at home (ancestry and a new kind that would tell you traits your kids would have lol) and I’ve avoided doing them because I’m paranoid about companies having my data - especially when the data isn’t protected by hippa laws. Now, with this test, I guess it doesn’t matter anymore and I might as well do them. Damn everything is available to everyone these days.

lovelybabybumpz · October 2018

@chloe97 I always say that 23 and me’s business model is so smart because people pay for the privilege of getting in their database. They’re a biotech company and need data to understand genetic diseases, but they don’t have to pay for any of their data. Genius!

aels12 · October 2018

Thanks all, I plan on calling my insurance tomorrow to get more info on what’s covered/what I’ll be paying if it’s not. Hopefully if it’s not covered it’s not too crazy out of pocket.

lovelybabybumpz · October 2018

I’m AMA and I’ll get additional genetic testing this go around. Starting with genetic counseling appointment on Monday. Last go around, the regular blood work screening showed false high likelihood of certain syndromes and needlessly scared me. So I hope the more sensitive tests are kinder to me.

chucksmom15 · October 2018

I’m AMA and still had to call my insurance. They had to give my OB a code to use when they bill it out or it wouldn’t be covered. I think that’s why people get bills for thousands of dollars when they should be covered.

MelissaMay82 · October 2018

I'm AMA and have a prior pregnancy with a chromosomal abnormality so I have an appointment with MFM/genetic counselor on 10/23. I will also have the Harmony labs drawn that day too.

peachy13 · October 2018

I did not do genetic testing with DD last year, solely because it would have cost a ton out of pocket since I was low risk, but my OB claims it is much more regulated and mainstream now, and the out of pocket cost isn't that bad. I'm having labs drawn next week, 10/18! My office uses Panorama which says it takes 5-7 business days to get results, so I figure I'll know by Halloween. I'm loving the fact too that I'll also be 13 weeks at that point, so not only will we be able to tell everyone by then, we can also let them know boy/girl.

chucksmom15 · October 2018

Mine is being drawn on 10/25 too @peachy13 and we’ll know by Halloween! I get to choose between MaterniTi21 and Counsyl. I did MaterniTi21 with my last.

mrsdee15 · October 2018

I'm trying to make an out of pocket appointment for an NIPT test - I've found two companies that will cap the amount you pay in certain circumstances if you don't have insurance coverage (I've heard this cap can vary by state, or may not exist in some states, but for anyone interested, Panorama and Maternit21 through the Every Mom Pledge do this if you'd like to look into them. Obviously do your research to make sure they'll do that for you before signing up). The hard part was finding an outside provider to do a consult without a doctor's referral, and you need a doctor's requisition order form to do the test. We finally found one with a midwifery group.

I have an NT scan scheduled for 10/19, I'll do the bloodwork for that this week.

zuuls_mom · October 2018

I have my Progenity test scheduled for this Fri! It'll be out of pocket like last time, but it ended up costing around $100. TOTALLY worth it. I'm looking forward to hearing everything is (hopefully) ok and finding out the sex!

misskimsue · October 2018

Can I just say what a pain in the a** it is to figure out insurance coverage/costs for NIPT? I spent the better part of an hour on the phone with the testing company, my insurance company, and the doctor's office and no one has a clue whether this test is covered. Back in 2015/2016 I had the Harmony test done and it was the same ridiculous dance, except I was low risk then and figured it would be denied- it was, and (as promised) I only had to pay the testing company $130. This time I'm AMA, and everyone seems to think that's a good thing because there's a higher probability of approval by insurance, but the testing company said it would cost up to $800 if approved and in network. I would rather they just deny it, so I can pay the lower cost! I was hoping to clear everything up before my appointment next week at 10w, so I could get the test as soon as possible, but looks like I'll have to get more info.

Having said that, I am planning to get the test again unless the cost is extortionate. For me at least, it provided a higher level of reassurance than NT testing, which is what we had with DS1 (Harmony was not offered then). I just want to know about risks as early as possible with as much certainty as possible. The sex determination is also a nice side benefit.

lovelybabybumpz · October 2018

I got my blood drawn for panorama yesterday. I hope that it's covered entirely because I'm old. I don't even want to pay $200. Now we wait 5-7 business days until results.

aels12 · October 2018

For those of you doing panorama/harmony type of testing, are you doing only that? Or are you doing the nt scan/ultrasound too?

journey721 · October 2018

@aels12 my doctor requires both if you choose to do the bloodwork.

misskimsue · October 2018

@aels12 In my experience, if you do a Harmony-type test it's instead of NT ultrasound. At least, in my previous pregnancy I asked if I could do both (just for another chance to see baby) and the doctor basically said if you do the Harmony test, the medical need for NT analysis is no longer there. I took this as a "No, you can't do that" ha ha. That's assuming the Harmony test doesn't uncover anything abnormal- I can't speak to additional steps they take in that case.

kvh22 · October 2018

@aels12 my doctor said the NT ultrasound and blood work that goes along with it will show a few things that might not come up on the NIPT/cell free DNA type tests so both are still recommended.

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