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NIPT Positive for Trisomy 21: Looking for experiences of others

  1. yellowbeach

    kiwi / 669 posts

    I'm honestly not optimistic about this being a false positive, and DH and I have decided that TFMR is probably what's best for us. We are going to wait for results of course, but we are going ahead and scheduling the procedure so that we don't have to wait any longer. My biggest fear is feeling this baby move and that just destroying me. I mean, I know that sounds silly since I can see it move on the screen and know it's there and real right now, but somehow those kicks feel more real. I just can't handle that.

    To top things off, the one OB at my practice who does TFMR is out of town May 26-June 5, and we are going to Italy to see my sister and 3 nieces for a family trip June 1-9 that was planned before we even got pregnant. Like others in this situation have mentioned, I think we just want to make our decision and move on with healing our family. The trip might be a great way to restart, or could be overshadowed entirely if the TFMR doesn't happen before we go.

    I feel very superficial and shallow planning such a thing around "my vaca to Florence" but we really needed this vacation even before any of this NIPT stuff went down. It's been a long 2 years for us.

    The other thing I realized - is I don't know a single woman who has had an Ab, or at least who will admit to it. If anyone is willing to talk with me privately (maybe by text) I'd appreciate it. I jus have no idea what to expect and how to predict how it will affect me.

    Thank you again ladies for being so supportive and non-judgmental. I think if we didn't already have a SN daughter that's been through intense surgery, we might be up for this... but last time almost broke my soul. I had trouble working, needed counseling/EAP at work... it was bad. I have a husband and I daughter who need me whole.

  2. bhbee

    pomegranate / 3950 posts

    @yellowbeach: I can’t imagine how heartbreaking this must be for you. So many hugs. And of course I am hoping you get good news but wanted to say that if not I 100% support your decision. I would do the same. And I know guilt is always a part of these things but try not to feel bad about the trip factor - it is so understandable to need to move forward. I felt that way about a d&c and I can only imagine how much more I would need to have it over if I were in your shoes. You’ve been through so much and are one brave, strong mama.

  3. lamariniere

    pineapple / 12275 posts

    @yellowbeach: you really have my sympathy. Let yourself feel whatever you need to feel, but be kind to yourself. Only you can decide what is right for your family and I just wanted to offer my support.

  4. lilyofthewest

    pear / 1528 posts

    @yellowbeach: I’ve worked abortion care for the last 15 years - happy to talk about anything I might be able to help with.

  5. LabradorLover

    apricot / 413 posts

    @yellowbeach: I’m so here for you. Like you, I didn’t know anyone either and have gone through so many different emotions and feelings over the last 2 months. Please reach out to me if you would like. I have no idea how to get you my number without telling the whole world but I’d be more than happy to chat with you, might be good for both of us...

    Regardless of what anyone says, I feel like we will always have guilt about it. It’s just an all around shitty situation and there will always be “what if’s” but you have to do the best thing for you and your daughter now.

    I also agree with your point of doing it and getting it over with essentially. DH and I made our decision on Tuesday morning and I called the doctor within the same hour. My practice only did TFMR on Wednesday’s and Thursday’s and I just knew I wasn’t going to wait at all to give my head time to think about changing my mind. I was 18.5 weeks pregnant and they said we could wait until 22 weeks to have the echo of the heart done but there was no way in hell I was waiting it out that long. I figured I might start feeling him, too, because I hadn’t yet and agreed that would make it so much harder to deal with.

    Sorry for the long post but I so understand what you’re going through right now and want to help as much as possible.

  6. CatchAFallingStar

    pear / 1987 posts

    I know this is not going to be a popular question and I certainly don’t mean it to be judgmental in any way. I am 100% supportive of your (and any other woman’s) choice. I’m just wondering... have you considered letting her be adopted? I know it would be emotionally very difficult, so I completely understand if not. But, maybe it could just be something to consider? I’m so very sorry you’re going through this.

  7. Mrs. Pajamas

    apricot / 476 posts

    @yellowbeach: ugh so so hard but glad you and dh are on the same page at least and have a fabulous trip to look forward to no matter what. Hugs to you.

  8. yellowbeach

    kiwi / 669 posts

    @CatchAFallingStar: I got so sick with my last pregnancy and nearly went into liver and renal failure from HELLP syndrome that no, adoption isn’t an option for me.

  9. rpparker

    apricot / 312 posts

    @yellowbeach: Sending you support!

  10. lilyofthewest

    pear / 1528 posts

    @yellowbeach: You're in or near a large coastal metro area, yeah? If you ultimately decide that termination is the best decision and you can't get in with the providers who usually do TFMR within your practice, you can absolutely be seen in a clinic setting. The physical process is very safe, very routine, and very quick. And while I would probably find it difficult to be waiting alongside women having elective terminations...I think I would rather see a provider who does dozens of procedures a day than one who does a few a month.

  11. Silva

    pomelo / 5707 posts

    @yellowbeach: You are making the right decision for you and your family. You are so brave for making it. I wish you healing and peace (and will keep my fingers crossed for a false positive in the meantime). I'm so sorry.

  12. Silva

    pomelo / 5707 posts

    @CatchAFallingStar: I don't want to jump on you on this thread, and I really don't want to derail the conversation, so hopefully this doesn't come across like that- but it seems fairly obvious that in this situation a person would have already considered all options available to her, or would be asking for advice regarding other options. The original poster was clear and certain in both her decision, and in her request for information (personal experiences from people who have had abortions, and for support). Offering other options isn't all that helpful or supportive at this point.

  13. CatchAFallingStar

    pear / 1987 posts

    @yellowbeach: I didn’t realize that. I’m sorry I brought that up. I was just wondering. My heart truly goes out to you.

  14. LCTBQE

    GOLD / pear / 1905 posts

    @yellowbeach: I haven't been on HB regularly lately and missed your post--I'm so sorry to see this. you sound like an incredibly rational and tender person and I have all the respect in the world for your courage and your decision. just wanted to offer support

  15. snowjewelz

    wonderful kiwi / 23155 posts

    @yellowbeach: Sending you nothing but love and support

  16. yellowbeach

    kiwi / 669 posts

    Today we had a pre-op appointment at PP. Never been there before, but have always supported their mission. I was dismayed to see how many legal hurdles are in place here (VA) to try and discourage women from this procedure. Education is one thing, but we were forced by law to have another US, even though we had one yesterday for the CVS, because they have to do a "consent ultrasound" by reading you 4 questions. Can't remember all of them but: 1) Do you want to look at the screen? 2) Do you want the sound on to hear the heartbeat 3) Do you want a photo to take home with you and 4) Is the US for the purpose of an abortion? The nurse felt so bad having to read me these questions and having to repeat a scan done a day earlier that had been sent digitally to their clinic. It's just in place to torture those of us going through this terrible process and make us feel like selfish assholes. I asked not to look at the screen, but DH couldn't avoid it, and was quietly sobbing by the end of the visit.

    I am ready for this nightmare to be over. It's breaking both of us. TFMR scheduled for Sat morning assuming we get CVS confirmation by Friday as expected.

  17. erinbaderin

    grapefruit / 4290 posts

    @yellowbeach: I am so so so so sorry. My heart is breaking for you and your husband. This is just an awful awful situation.

  18. bhbee

    pomegranate / 3950 posts

    @yellowbeach: that’s so awful and I am so sorry. I appreciate you sharing your experiences. I can’t even imagine.

  19. Silva

    pomelo / 5707 posts

    @yellowbeach: I'm so sorry.

  20. periwinklebee

    GOLD / nectarine / 2910 posts

    @yellowbeach: I'm so, so sorry. It makes me really angry that you had to go through this completely unnecessary and hurtful stupidity during what is already such an incredibly difficult time.

  21. mediagirl

    hostess / wonderful persimmon / 25255 posts

    @yellowbeach: oh my God. What a sad and disgusting way to be treated. I'm so sorry you had to go through that. Thank you for sharing that with us.

  22. LabradorLover

    apricot / 413 posts

    @yellowbeach: ugh I hate the word abortion. A termination is what I had and I will never call it anything else. Abortions to me are for people who had an “oops” and aren’t ready for a baby - totally different from yours and my situation! I can’t believe they made you go through that and I’m so sorry you had to. I truly feel your pain and hope this nightmare ends soon for you too. Hang in there.

  23. Pumuckl

    pomegranate / 3481 posts

    @yellowbeach: Wow, my heart just hurts for you after reading your account of the appointment at PP. I am so, so sorry for all you have to endure and wish you and your DH all the strength in the world for the upcoming days and weeks. Big, big virtual hugs

  24. NorthStar

    pear / 1871 posts

    @yellowbeach: My heart breaks for you and your husband. No one should have to go through that. I'm so unbelievable sorry that you had such a horrible experience and hope you get some answers tomorrow.

  25. Littlebit7

    pear / 1849 posts

    I’m so so sorry you and your family are going through this. I read your account of PP; it is abhorrent that you were treated this way and abhorrent that any woman would be treated that way no matter their reason for being there. I cried for you.
    Sending you so much love. You are doing the right thing for you and your family.

  26. lilyofthewest

    pear / 1528 posts

    @Littlebit7: @NorthStar: @Pumuckl: @LabradorLover: @mediagirl: @periwinklebee: Just to be clear, PP does these things because it is the state law that they must. PP worked really hard to oppose the passage of these laws and continues to work to get them repealed.

    Anti-choice lawmakers in Virginia passed a suite of targeted restrictions against abortion providers in 2011 that required, amongst other things
    - that facilities that provide abortion care (even just the abortion pill!) have to meet the same building requirements as hospitals
    - that women seeking terminations have an ultrasound at least 24 hours in advance that must include the specific questions that @yellowbeach detailed
    - that women seeking terminations must listen to a scripted recording detailing all of the potential risks of abortion. Providers are not permitted to compare these risks against the (higher) risks of remaining pregnant.
    - provide state-mandated (factually inaccurate) materials about fetal development, prenatal care, and adoption.

    Some of the worst of the facility requirements were reversed in late 2016 -- but not until after nearly 1/3 of the state's abortion providers had already been forced to close.

    The current makeup of the board of health and state government makes me hopeful that things will continue to improve....but for right now the law is needlessly cruel to women.

  27. lilyofthewest

    pear / 1528 posts

    @yellowbeach: I'm so sorry you had to deal with Virginia's stupid laws. I used to work in Virginia and it is so hard.

  28. Lahela017

    cherry / 114 posts

    @yellowbeach: I'm so sorry you are going through this. I totally support the choice you made, and it is the same one I would make if I were in your situation. I'm thinking of you and your husband.

  29. Littlebit7

    pear / 1849 posts

    @lilyofthewest: oh no i totally and completely understand. I’m thankful PP is there and an option for women. I just didn’t want to get too political, ya know? My family is all in Virginia..it had been nice to see a slow improvement across a lot of social programs and general humane treatment of all Virginians.

  30. Mama Bird

    nectarine / 2721 posts

    I'm so sorry, and so angry that you've been put through this additional trauma. Big hugs and will be thinking of you.

  31. winniebee

    hostess / wonderful grape / 20802 posts

    I came here to say that you are a kind and loving mother. I support you. I'm so sorry for the additional procedural hoops that you have to jump through. On top of the trauma of the situation, it is just so unfair.

    I terminated the third pregnancy of our very much loved and wanted third son, who had severe spina bifida. He was born sleeping on June 2, 2016 when I was 18.5 weeks pregnant. It was the most difficult decision of my life and the most difficult time in my life. However, I know that it was the only decision for my family. Here is the thread about it:

    http://boards.hellobee.com/topic/our-baby-has-spina-bifida

    I'm happy to answer any questions that you have - feel free to post on my wall. I'm thinking of you.

  32. MrsMom

    apricot / 466 posts

    My heart hurts for you! I'm so so sorry you have to go through all these hoops when it's already been hard enough on you!

  33. Bluemasonjar

    kiwi / 614 posts

    Sending hugs and support!!!

    I completely feel for your situation as my DS has some special needs and I am currently pregnant with #2. I'm sorry for your experience at PP, it makes me so angry that politics have made it harder to get access to care.

    Hoping that you will get some peace and I think your trip sounds like much needed time away to start healing.

  34. pachamama

    persimmon / 1408 posts

    I'm so sorry. I'm aching for you a little. And I'm angry you had to go through all that bullshit with the VA. My lord.

  35. LindsayInNY

    coconut / 8981 posts

    Sending you so much love.

  36. nwm

    apricot / 353 posts

    the cruelty and wrongheadedness of these stupid and misogynistic laws is overwhelming. i am so sorry you had to experience this. sending you lots of support

  37. Mrsbells

    pineapple / 12389 posts

    @yellowbeach: I hate those laws! My heart hurts for you

  38. Pollywog

    clementine / 772 posts

    Just wanted to let you know you are in my thoughts. As a fellow VA mom, I ended up going to DC when I needed a D&C because I couldn't emotionally deal with the forced ultrasound and questioning. I will be thinking of you on Saturday.

    My D&C was at 11 weeks and in a hospital setting (as an outpatient). I'd be happy to talk to you about my experience. Feel free to wall me.

  39. Caly

    GOLD / nectarine / 2740 posts

    @yellowbeach: I am so incredibly sorry you and your family are going through this. I just wanted to let you know I'm thinking/praying for you and to give you so many hugs

  40. yellowbeach

    kiwi / 669 posts

    @lilyofthewest: The worst thing was that when we asked why they were pushing for a TVUS, they said that bc of the old law mandating TVUS, many of their sonographers only knew how to to TVUS and that's all they were comfortable with. Because we pushed, we had a TAUS but it was fairly obvious to both of us who are US trained that she wasn't comfortable. It's so crazy to think how much many of us fought to block that stupid law and here it is essentially in practice for no good reason. #endrant

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