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November 2017 Moms
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Is anyone considering an Amnio

ShePersistedShePersisted member
in November 2017 Moms
I am curious if anyone else here is in a predicament to possibly consider an Amnio. Our risks after the sequential came low but due to the EIF marker I'm sort of grappling on what to do. On one hand my risk for DS is low 1:1200 and I'm 39 so it seems unborthersome but then I cannot be certain due to the inconclusive NIPT. I know the decision to do an Amnio is very personal and the dr won't say anything other than that I have an option if I want it. DH thinks I'm overthinking and that we don't need to worry anymore as baby looked great. I of course am stuck in a rut and cannot stop researching but there isn't really anything out there that is helping me make up my mind except that my odds are pretty decent for my age. 
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Re: Is anyone considering an Amnio

  • bcashawbcashaw member
    It's such a hard decision .  Personally I would do it because the risk to baby in an amniotic isn't that high and it will be worth the peace of mind. 
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  • Airynn ChicaAirynn Chica member
    Is it something you would find out at 20weeks anyway? Would it help the rest of your pregnancy to be a lot less stressful? 

    I am against any testing for myself but I'm not a worrier and know I'll find out anything that needs to be known at my anatomy scan. But if i was stressed and worried I might do the tests to ease my mind. 
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  • DuchessOfCambridgeDuchessOfCambridge member
    @ShePersisted have you read Expecting Better? If you're able to get a hold of it, I thought her section on genetic testing was great. If I'm remembering correctly (come on pregnancy brain), she pointed out the risks of the tests vs the risk of the disorder you're worried about and whether or not its worth it to test.

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  • ShePersistedShePersisted member
    Well my genetic counselor thinks that we could wait until my AS and if there is nothing concerning there and if that relaxes me then it may be fine. My dr offered the same option and told me I could wait until then to decide and if I did get a positive on the Amnio I'd still have time to make a decision. Now I have of course not thought that far ahead and frankly I think 99% the baby is fine. But I just hate when the 1% is unclear. I know the NIPT is not 100% but it is pretty darn close. Only if I could figure out what made it inconclusive twice. 
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  • jess0211jess0211 member
    @ShePersisted if something was concerning at AS I would personally be considering it but I am a very anxious person and a slight control freak. I am also AMA so that would factor in for me.



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  • ShePersistedShePersisted member
    @DuchessOfCambridge I read it a while back but I don't remember fully. I actually discussed that with my GC. The risk of Amnio in my hospital is like 1:500 or so so much higher as compared to the odds I have. And that is why it's such a hard decision to make. It's not black and white. I wish this simple math was enough to convince me. It does seem to convince DH. He is so cool about it and is certain baby is just fine. 
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  • DuchessOfCambridgeDuchessOfCambridge member
    @ShePersisted I don't blame you at all, you're absolutely right that your baby's life is much much more than just math.

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  • dragonfly87-2dragonfly87-2 member
    I think while more information can be helpful, you need to decide how knowing will impact your decision. Would having a baby with a disability want you to consider terminating the pregnancy? If so, then having more info would help. If not, then it may not really be worth the stress, risk and money. Just my thoughts. 

    I saw this as someone who agreed to a cystic fibrosis screening knowing it wouldn't change my decision, and then paid $650 for the test. I wouldn't have done it had I known the cost ahead of because my decision wouldn't have changed. 
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  • am+mommyam+mommy member
    For me personally, I would not get any invasive testing unless the possible condition is life threatening to my baby. If the risk was for Down syndrome or something that didn't threaten the life I would mentally prepare myself and know I will love my baby no matter how he/she comes out, and it's not worth any risk. I am also not much of a worrier so I can totally understand the personal reasons of others who want to do it for peace of mind. 
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  • ShePersistedShePersisted member
    I really don't want to get into the abortion debate here but yes I think it will impact my decision on what I would want to do that's why this is hard. Now that of course does not mean I've made up my mind because I don't know enough. This is less about decision making but more about the anxiety it's causing me. And I don't think getting an Amnio and risking the baby is as easy as it sounds even if it will give me peace of mind. 

    I honestly am just asking if anyone else grappling with this decision and how they handled it. I get all the points about if it impacts my decision etc. I get that. I am looking to see if anyone else is dealing with this and how they are making their decisions. 
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  • MississippiCatfishMississippiCatfish member
    So sorry you're having to make these decisions about risk vs benefit, @shepersisted. Hoping you can find someone who has been in your shoes to talk with.  <3
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  • dragonfly87-2dragonfly87-2 member
    @ShePersisted sorry if my comment came across as an abortion debate, that wasn't my intention. I was offered to do some genetic testing and that was my experience/choice. So that's why I responded. It's not an easy decision, but it sounds like you really want to do it. I am not in your positon, but from what you describe you aren't going to let this go (not a bad thing), so I would let that guide the decision. 
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  • ShePersistedShePersisted member
    @dragonfly87-2 of course. No worries and no apologies needed really. I know you were trying to
    help. I just did not want the thread to veer into that direction. I am struggling because no matter what anyone says ultimately it's a personal choice about an Amnio and I get it's very largely driven by what you'd do with results. If my risk was high it would have not even been a second thought. My risk is low but not completely eliminated that's why it's hard. 
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  • dragonfly87-2dragonfly87-2 member
    @ShePersisted I get that and it really just depends on what I was considered being at risk for. For me, Cystic Fibrosis wasn't something that would change my mind, but other severe disabilities or life-threatening conditions would create a different situation that I would consider my options. I was suggesting that if you hadn't thought through what you would do with the information (which is sounds like you have), then to start there. I originally thought my blood work would count toward my overall pregnancy costs and the same deductible, but found out that isn't the case. So when I am shelling out hundreds of dollars for test (yes, this is money motivated), I don't see the point for some conditions. But for others, I would re-consider.
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  • ShePersistedShePersisted member
    @dragonfly87-2 tell me about it. I am now considering doing the harmony test and paying out of pocket ($2000) because the damn insurance won't pay for another testing round even though the MT21 gave me no results. I would not care about the money if i knew I'd be getting the result but there is no sure shot way of knowing and I could be throwing $2000 for nothing. I might still do it though. 
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  • RiverSong15RiverSong15 member
    edited June 2017
    @ShePersisted My DH and I are/were in this situation. Our first sequential screen results came back at 1:70 for Downs. We did NIPT to try and avoid the amnio, and if it had come back as inconclusive or positive, then we would have done the amnio. Regardless of if we decided to terminate or not, we'd want as much time to process the results and make a decision, and if we decided to keep the baby, we'd want as much time as possible to prepare for a child with special needs. I would not want to be first dealing with that diagnosis immediately after birth. And I know my anxiety levels would be through the roof the entire pregnancy if we didn't get an answer from either NIPT or amnio. That info was worth my peace of mind, no matter the OOP costs. That's why I dislike it when people say "don't do the amnio if you're not considering termination". There are other reasons having more information is useful, depending on each person's personality. 

    It would probably we worth asking your clinic what their clinic-specific miscarriage rates are with amnio, too. Although the risk you find on Google is 1:300 to 1:400, our genetic counselor said their clinic rate was 1:1000. That would have swayed our decision considerably if the NIPT hadn't come back OK. All that being said, we still don't have our spina bifida screening results back yet, so if that's elevated, we may end up doing an amnio anyway. 
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  • jess0211jess0211 member
    @ShePersisted I read somewhere that some of the companies doing testing will reduce your cost if you have to pay OOP. You might want to check.  I think I saw it on the MT21 site, but others may offer it as well.



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  • ShePersistedShePersisted member
    @jess0211 thanks for that tip. I have full intentions of fighting with my insurance co for one and two yes I'll try and negotiate that cost down if I get the green light from my dr for another provider. I think since I have to wait for my AS anyways I might as well try and get the NIPT done yet again to see. Maybe third time will be the charm. 

    @RiverSong15 that's helpful to know and thanks for sharing your exp. I'm glad you got your NIPT results. As mentioned above I am going to chase that one more time. Fingers crossed I get lucky this time. 
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  • blueskies17blueskies17 member
    *dirty lurker*

    @ShePersisted I'm sorry that you have to grapple with this decision. I talked to the billing department for Harmony (Ariosa Diagnostics) last month and they told me that if insurance denies converage, Ariosa will only charge you $199 out of pocket. I also talked with a Harmony rep and they told me the same thing. I would recommend calling Ariosa's billing department to confirm. 
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  • jess0211jess0211 member
    @ShePersisted this is from the mat21 website

    And the harmony one (I was waiting for DH to come back from store and had some free time,  hope it helps!)





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  • safinn21safinn21 member
    @ShePersisted so sorry you are going through this. *Potential TW* I stupidly let my Dr convince me to do genetic testing when I had originally not wanted to have it done and my results came back suspicious for Trisomy 18. It didn't give me a percentage or a likelihood of the baby having it, but they suggested I have an amnio. Trisomy 18 is a fatal disease. Basically I cried for days and googled my life away and have decided not to do the amnio at this time. I prefer to do less invasive testing first and if my anatomy scan shows there are soft or hard markers for the disease then we will do the amnio. If the baby looks good at the scan, then I'm putting it out of my mind. For us, terminating is not an option and so I am just choosing to wait. I don't think you're wrong either way you go. I will say the anatomy scan should be in just a few weeks so if you can wait it will be here quick! We got these results a few weeks ago and its been really tough (hence me being pretty MIA on here) but I think it was the right choice for us. But as you said it's a totally personal decision and you will make the best choice for you! Just wanted to share since we're dealing with similar decisions in regards to testing. *End TW*
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  • ShePersistedShePersisted member
    edited June 2017
    @blueskies17 @jess0211 thank you so much!! I did see that stuff on their website as well. I've sent an inquiry to natera already. That's very good to know regardless and I will call them first thing tomorrow and try and get a negotiated rate. 
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  • DuchessOfCambridgeDuchessOfCambridge member
    @safinn21 I'm so so sorry you're going through that. DH and I wouldn't have wanted to terminate either but that makes it so much harder. I'll be thinking of you and your baby and hoping so so hard you get great results at your A/S. We're all here if you ever need support or just need to vent. So many creepy internet hugs  <3

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  • ShePersistedShePersisted member
    @safinn21 I am so sorry. This is so much hard. From my research I have read that NIPT while is very good for catching  Tri 21 can have false positive for 13 and 18 and I do hope you are in that percentage of false positives. I totally understand where you are coming from and pray your LO is just fine. They are screening tests after all for a reason. Hang in there and do let me know how the AS goes. Thoughts and prayers for you and your baby. 
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  • safinn21safinn21 member
    @DuchessOfCambridge @ShePersisted Thanks so much laides, I appreciate the support. In all of my searches these tests have a HUGE number of false positives and lead to unnecessary procedures when the baby is fine all along so that is what is what is giving me the most hope. Either way this LO one is so loved and we are just happy to be pregnant no matter the outcome. BUT I am on pins and needles until we get our next scan. Anyways, all of that DD post just to say I totally understand your dilemma and I hope the choice you make eases your mind!
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  • am+mommyam+mommy member
    @safinn21 Good luck at your AS I hope everything looks great and normal. 
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  • adiratadirat member
    @ShePersisted You have PM.


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  • ShePersistedShePersisted member
    @adirat PMed you right back. 
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