April 2019 Moms
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NIPT (non invasive prenatal testing) thoughts/knowledge exchange

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Re: NIPT (non invasive prenatal testing) thoughts/knowledge exchange

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    I had it done last Thursday. The lady said it would take about 5 days. So I’ve been checking online every half hour since Monday. I’ve been having a hard time forming a connection to this pregnancy so I just want to make sure everything is ok and then find out the sex so maybe I can start shopping and hopefully get excited about adding another human to our family. 
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    UGh I really want to get the tests done but for some reason my doctor said it would be 3k?
     Thats obviously wrong right? so the discount rate is 200-500ish? 
    Me: 32 DH: 31
    TTC #2 since January 2018
    Baby #1 DD  Born 8/25/2016
    BFP: 8/11/18 Due: 4/26/18

     

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    I just got a call on my Harmony results saying they “didn’t get sufficient fetal cells to test.” @BarefootContessa do you know if that’s the same as “low fetal fractal DNA”?
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    I'm on day 8 of waiting for results. I am AMA for this third pregnancy, so this is my first experience. Doc said ten days for sex results (they are uploaded to a website), and phone call only if something is wrong. I jump every time the phone rings! I had 13 vials drawn, which included the NIPT and all of my first trimester screenings. I cried as the tech kept reaching for more. But, after the NIPT results, we will know all there is to know at this point. Trying to be patient, failing miserably.
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    I’m going in for my NIPT blood draw on Monday morning (will be 10w2d). Since I am AMA I’m nervous, but hopeful that this and NT scan will give me some peace of mind. I don’t really want to find out the sex (one of life’s only true surprises!) but the OB told me it would be uploaded to my patient portal regardless — so I’d have to be disciplined enough not to look (which I’m definitely not!). Hubs wants to know the sex, but ultimately said it was my decision. Since it will be available online, I suspect we’ll find out. But I may not tell others — we’ll see! Trying to avoid all the pink/blue stuff.
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    @lyse01 insufficient fetal cells means they didn't have a high enough percentage of fractal fetal DNA in your blood to test. The threshold is usually 4%, meaning at least 4% of your sample needs to be fractal fetal DNA. My sample had a fetal fractal DNA of 6% at 9w1d if that helps at all. The longer you wait=higher %

    Me: 32 / DH: 33
    DD born: 3/31/19

     




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    Results are in per doc's email, but I missed her call. Now she's out of the office for the day!
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    Thanks, @sheknows6. Sounds like the same thing.
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    lyse01 said:
    I just got a call on my Harmony results saying they “didn’t get sufficient fetal cells to test.” @BarefootContessa do you know if that’s the same as “low fetal fractal DNA”?
    Yes, what @sheknows6 says. Remember my situation was extremely rare, and I was 13 weeks with the first draw, and 15 weeks with the second. That was a sign that something was wrong, because I was so far along gestationally. I'm sure everything is fine.

    Married: 11/2011
    DS-9/2012
    DD-7/2015
    Sweet Angel Boy born too soon 12/17/17
    EDD-4/2019

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    @BarefootContessa I’m sure it’s fine, I’m just keeping it in the back of my head if it happens again.
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    @lyse01 I am in the same boat. Did my first Harmony blood draw at 10 weeks 6 days, it was inconclusive. Did another redrew on Tuesday, at 13 weeks, crossing my fingers we get results this time.
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    rache1990rache1990 member
    edited October 2018
    I just got the panorama done yesterday with the mobile phlebotomist (so weird haha) really looking forward to the results.

    From my research even women under 35, the results are much more accurate than the prenatal screening which is why I wanted to do it. I requested it with Kaiser when I had my first pregnancy and they said no because they only offer for women over 35, no option to even pay. New insurance it was cheaper out of pocket toward deductible than the screening (225 compared to 400 for the screening). Can’t wait to find out the results!
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    For anyone who still hasn’t gotten a first draw, Harmony is two vials and Counsyl Prelude is one vial. I know because different practice (MFM vs OB) use different labs 🤷‍♀️
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    @Piccola1988, congrats!  As far as ideas to announce, I'm sure Pinterest has a ton more than I can think of, but personally I liked the idea of the older sibling putting painted handprints on a shirt over my baby bump to show the sex!  (You take one black and white picture with their hands pressed on, then a reveal in color as they pull them away, or something like that).  Even though I hate the stereotype of blue for boy, pink for girl...

    Or you could do a cute photo of your first son with a blue balloon or other prop?
    Pregnancy Ticker
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    For my first reveal, I made DIY scratch off tickets (they were actually super simple!), and gave them out to all my family at Thanksgiving, and one of them had all three matching baby blocks in the color (blue for my son).  So one person "won," and found out first!
    Pregnancy Ticker
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    Those are all super cute ideas @kangstadt!  If we do a reveal with our families I'll have to steal one of your ideas, but I suck and I feel too shitty to go buy things, so I phoned it in for H.  I stuffed a card that says it's a boy inside of an envelope with pink writing on the outside to throw him off, and left it for him to find when he gets home from work.  I agree I struggle with the gender stereotypes associated with reveals, but ugh, so much cute!  With DS I couldn't get comfortable with it so I just slipped in the sex when I announced the pregnancy.
    BabyFruit Ticker
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    @bhoop941 my doctor set me up to call the maker of the test and about 4 wks prior I called their office number.  The woman who works for the test maker called my insurance and got a pre authorization for me to take the test.  My insurance approved it because I am over 35, however the cost is not covered by insurance. The test maker quoted me the price of $249 (they gave me a deal) which I plan to pay to get the test done.  Hope that helps! Maybe the test maker can contact your insurance for you. And I would recommend seeing if they can offer you a lower price if your insurance doesn’t cover 
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    @racherickson90 I did panorama, too!  waiting for results still...blood draw was last thursday.  hopefully today!
    Pregnancy Ticker
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    @shelikesasunburn good luck! Can’t wait to hear. My husband is asking me multiple times/day if I’ve heard anything. It’s going to be a long week. 
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    Just had my blood draw today for the Natera Panorama test, they said 10-14 days for results.  Eep!
    Pregnancy Ticker
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    So my second NIPT test came back inconclusive too. 

    The good news is that my NT ultrasound and EFTS blood work all came back normal so my doctor isn't worried too qorried about chromosomal abnormalities.

    But I am still just feeling really anixous and depressed about it. Not so much for not knowing the sex. But the fear of there being a higher risk of abnormalities because of the two inconclusive results is there. And feeling like this is my fault because inconclusives are more likely if you are overweight and I can't help but feel like if I hadn't been so depressed prior to getting pregnant I wouldn't have put on so much weight and I would be slim enough to get results. Just want to crawl into bed and cry.
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    lyse01lyse01 member
    edited October 2018
    @happymoni21 hugs. Pregnancy doesn’t wait until you are the perfect weight, in the perfect house and perfect car and perfect relationship, with perfect bank balances and the perfect medical team. You deal with the cards in your hand and do what you can to play them well. From here out, you can eat healthily and limit further weight gain. You can inform yourself on how the inconclusives might show a problem, and more importantly on why your doctors think they may not. You can what-if with your family to figure out courses of action. And yes, you can wallow today if you need to.

    Eta: words, I hit post early.
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    @lyse01 thanks so much. Spent the weekend offline just hanging with family for Canadian Thanksgiving and am feeling much better.
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    I go in for my Panorama test next Monday.  My OB wanted to wait until 12 weeks, so I don't have to go back for insufficient cells.  I am so excited and nervous at the same time!!  I think once I find out the sex, I am going to buy a corresponding onesie and have the kids open it together (after fiance of course)!  Then we are going to wait a while to make it public.  The "what are you naming it" questions drive me batty!  And those will be next.

    DS1 is 7.  DD is 1.  DS2 is coming in late April.


    Lilypie Maternity tickers Babysizer Cravings Pregnancy Tracker
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    Hey ladies! So I had my first appointment at 11.5 weeks last week and they went ahead and ran the Prelude Prenatal Screen (at my request) with Counsyl. My blood work was done on Thursday and I got notified last night that my results were being reviewed by a clinician (Which meant they faxed the results to my doc). So I called my OB's office this morning and they gave me the wonderful news that no abnormalities were detected and we're having a BOY! 
    This was really important to both my DH and I to have done because we really wanted to be able to be prepared for as much as we could in the case that something came back positive. We are the type of people that would rather have plenty of time to research doctors and conditions and care techniques rather than flying blind. So for us it was a must. But I totally understand those who choose not to, it's all choice and what you're comfortable with!
    I did read some bad reviews about genetic testing companies in general, billing very high amounts to insurance and leaving some people stuck with outrageous bills. So any advice I would give to you is to first ask the company what the price is for self pay for an individual without insurance (Apparently most of these companies will charge MUCH less in this situation), and then call to see if your insurance covers the cost, at what percentage and if you have copays or deductibles to factor in! Could save you a few hundred to a thousand bucks! 
    Hope you all get the answers you're looking for!  <3
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    ashley_mb said:
    Hey ladies! So I had my first appointment at 11.5 weeks last week and they went ahead and ran the Prelude Prenatal Screen (at my request) with Counsyl. My blood work was done on Thursday and I got notified last night that my results were being reviewed by a clinician (Which meant they faxed the results to my doc). So I called my OB's office this morning and they gave me the wonderful news that no abnormalities were detected and we're having a BOY! 
    This was really important to both my DH and I to have done because we really wanted to be able to be prepared for as much as we could in the case that something came back positive. We are the type of people that would rather have plenty of time to research doctors and conditions and care techniques rather than flying blind. So for us it was a must. But I totally understand those who choose not to, it's all choice and what you're comfortable with!
    I did read some bad reviews about genetic testing companies in general, billing very high amounts to insurance and leaving some people stuck with outrageous bills. So any advice I would give to you is to first ask the company what the price is for self pay for an individual without insurance (Apparently most of these companies will charge MUCH less in this situation), and then call to see if your insurance covers the cost, at what percentage and if you have copays or deductibles to factor in! Could save you a few hundred to a thousand bucks! 
    Hope you all get the answers you're looking for!  <3
    Funny you mention Counsyl. I just came over to scan for anyone who used them. I got notified this evening that Anthem denied the authorization (had blood drawn Saturday). My insurance usually covers everything, I don't think I've ever been denied anything so I didnt think much of it. Turns out, if you dont accept the $200 Counsyl price prior to the insurance denial, you may lose that price. I'm hoping to get the bottom of the issue tomorrow. 
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    @heather0128 So I was just running back here to update on my previous post! I called my insurance company and they do cover, but I still have a 30% coinsurance I have to pay, which for an outrageous bill of $2000 would have left DH and I to pay $600 for this service! Fortunately, I immediately called Counsyl and told them I was looking to pay for this immediately (to deter them from running my insurance) and because they had not already submitted to my insurance as a claim yet, they were able to give me the self pay price of $199! Holy cow! This is mind-blowing! From reviews I've read on various sites, most of the other genetic screening companies are the same in their pricing as well! This is VALUABLE information for all moms looking to get this testing done! Call and find out what your insurance will cover first- as if it's not covered 100%, it might be MUCH more affordable to self-pay and save you hundreds of dollars to use toward your baby  :open_mouth:
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    My insurance told me they cover 100% - we'll see if that's accurate or if they try to bill me.  If they do, I'm arguing my butt off.  We wouldn't have chosen to do the testing if it wasn't covered.

    This is definitely good information to have, thanks @ashley_mb!
    Pregnancy Ticker
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    @ashley_mb I was able to get the $199 price as well. There is a definite disconnect with my insurance right now, they said they didnt have a denied claim on file but they probably would have denied it if they did have it. The $199 wasn't worth the argument, so we just paid it. If something were to come back abnormal, and we it for further testing, we will have a more comprehensive conversation with insurance.
    So glad you were able to get the discounted price. I really cannot say enough about Counsyl's customer service, they've been great. 
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    My insurance is now refusing to pay for my NIPT *after* I got it pre-authorized, followed all of the rules, had it done precisely on the day specified, and went to the lab specifically called out in the authorization letter. Apparently the lab they forced me to go to DOESN'T PROCESS THESE TESTS and forwarded it to another lab and that lab is out of network. How the hell was I supposed to do anything differently?! I did what they told me to do. The in-network lab forwarded my test to the out-of-network lab without my permission or knowledge. Now I am stuck footing the $1100 bill. I am so pissed right now. 
    Lilypie Pregnancy tickers
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    Had my draw last Tuesday and results were in first thing this morning.  Baby looks 100% "normal" genetically and it looks like DS will have to show baby brother the ropes.  I was praying for a girl so we could be done, and now the thought of 3 boys terrifies me from trying for #3.🤷🏻‍♀️
    ME: 34 | DH: 36
    Married: 6/2016
    TTC:6/2016
    BFP: 11/22/2016 | EDD: 7/29/2017






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    @eli_belle I’d recommend filing an appeal letter with your insurance, since you tried to make things in-network to the best of your abilities. Call the insurance company and ask them what they require to start the appeals process. If they deny the appeal, there are companies out there, like Better, that will fight for better out of network reimbursement.

    I’ve had a similar situation where an in-network lab forwarded an expensive test to an out-of-network facility without any warning and I was able to get the test covered as in-network. I was on the line for about $5k. They don’t expect pushback. 
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    Had my NITP done a few weeks back. They came back with all the down syndrome and the rest negative, but told me I am a carrier for the polycystic kidney syndrome. Now they gotta test my significant other to see if he is a carrier. I am trying not to be paranoid. Because the chances that the baby has anything are much higher than he has something. But lord have mercy when I have another child I will do a regular genetic testing lol I am too paranoid now
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    @oksana1987 it sounds like they did the carrier testing in addition to the NIPT—it’s not the same test. The carrier testing tests for 178(approx) different different syndromes you can be a carrier for. Nearly everyone is a carrier for at least one. It’s good to get your husband tested too, but even if he’s a carrier your child would only have a 25% chance of having the disease. I wouldn’t be worried/paranoid at all, being a carrier for only one thing is totally typical...and trust me as a 4th time mom, the “regular” genetic testing is a lot less certain/conclusive and leaves one more prone to worry. :)
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    @catherineclaire78 yes I think  that was it. And that's what I am thinking. Nothing bad should be happening. With the new technologies we have more knowledge of things that we need lol makes us more paranoid and stressed 
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    @Oksana1987 right there with ya. My dr recommended I get the carrier screening done since I’m an Ashkenazi Jew. Well, I found out yesterday that I’m not a carrier for disorders more common in Jews, but I am a carrier for 2 other scary diseases. DH will need to get his done now, and then we wait another 2 weeks. Reminding myself that its very likely he’s not a carrier for the same 2 random diseases, and even then still 1 in 4 chance of LO being affected, but it’s still a bit stressful
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    Hello April moms! Had NIPT done at 13 weeks, results are fine, but I am concerned that fetal fraction was only 6% when average is 8% and according to my initial research at this terms it is usually 11% and higher! Has anyone had a similar concern? Thank you in advance!
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