Amniocentesis experiences? — The Bump
April 2018 Moms

Amniocentesis experiences?

Hello everyone. Please forgive me for being a lurker for the past several weeks. I haven't wanted to jinx myself or this pregnancy (I've had two previous losses and am a FTM). Last week after waiting for 11 days to hear back, I received my panorama results. Unfortunately, my baby girl came back high risk for Turner Syndrome. Even scarier is that my doctor admitted to me that they haven't had any patients in the practice receive this result before and they weren't sure as to next steps. So I was left to my own devices for four days googling horror stories and positive stories but still not knowing what to do next.

Finally, I received a call from the Regional Perinatal Center that I was booked for three appointments on November 8. A level II sono (all others have looked perfectly normal)., followed by a meeting with a geneticist and they have scheduled me for an optional amniocentesis after that. At that point, I will be 16 weeks.

I have heard mixed stories on false positives for Turner Syndrome with panorama and my SO believes that the amnio could provide us with either a sense of relief or we can spend the next six months preparing for a very different life than we expected but we can research specialists and make arrangements to give that little girl the best possible life given the circumstances.

I am looking to hear from other women who have been here before and why you did or didn't choose to get the amnio. The doctor told me that the m/c rate from amnio is less than 1 in 500 which is less scary than I had previously heard, but still risky none the less. Any experience that is shared is GREATLY appreciated.

Re: Amniocentesis experiences?

  • @hlr8347 I'm so sorry to hear you didn't receive the results you were hoping for and I can imagine how scared/worried you are right now. I am shocked to hear that your doctor told you they weren't sure as to next steps. I would be very concerned about that if I were you and I would highly recommended that you consider looking for another OB. Even if it is something they have never encountered, they should have been prepared to share the next steps with you. Telling you that they are not sure if not appropriate or professional and certainly not helpful for a worried mom. I am also wondering what "high risk" percentage your test came back? They should be able to tell you if it was like "1 out of 20 or 1 out of 100" percent chance the baby has the condition. This may help ease your mind a bit and help you make a decision. Also, as you mentioned already... my doctor told me that the NIPT test is not as good/accurate at detecting conditions like Turners as it is for Downs Syndrome. So that is also something to consider.... I have never had to make this decision before so I cannot say why I would or would not do an amino but I think having all the facts/information first will certainly help you make a decision. Hugs.      

    hlr8347atreestump86
  • @JJMNO1616
     The problem is each time I talk to tell they spew facts right off of panorama's website saying that there's XYZ% chance of a false positive and then in the same breath tell me that the lab told them it's a 50/50 chance. I have officially switched dr's with the referral to the Perinatal Center so I don't need to worry about working with a clueless practice. I gave them a big piece of my mind Monday morning when they still didn't have any answers for me and said it can take three additional days to secure an appointment. By far the worst week of my life so far. Fortunately, the PC is VERY responsive and got me in for all of the necessary appointments on the same day so I am grateful for only one anxious day rather than three separate ones.
    jenotontxg_amossstalkinghorse
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  • I’m sorry for what you’re dealing with. I’m glad that you’re switching hospitals/doctors, I would have been frustrated to get a call from my doctor with a result that they didn’t know what to do with. I haven’t had this experience myself, but I hope the PC will give you the information you need to make the best decision for you. 
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  • I am so sorry you are going through this!  I don't have experience in my previous pregnancy, but based on what my next u/s says (if it confirms something), then I will be faced with having to do a amnio as well.
  • @hlr8347 I would also confirm with the PC if it's their understanding that there is a 50/50 chance. They seem a lot more on top of things. 
    hlr8347
  • @hlr8347 - no prior experience, praying for a good outcome for you and baby.
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    hlr8347
  • I don't have any advice or experience. I just want to share that I'm sorry you're going through this, and I'll be sending thoughts and prayers for a positive outcome. Hopefully the perinatal can help you further with making a decision. 
    hlr8347
  • 6 years ago when I was pregnant with my first daughter I had a blood test that is referred to as the Quad. It is a blood test that tests for the the chances/risk factor of chromosome abnormalities. Mine came back positive for a high risk of down syndrome. I believe it was 1 in 40. I have a very type A personality. I needed to know so my husband and I decided to do the amnio. The results come back negative for down syndrome and I had no issues or side effects from the amnio whatsoever. Speaking from experience, if you do decide to go with the amnio make sure you trust your OB or whoever is doing it. Mine has a ton of experience and I great amount of trust in her. 
    hlr8347
  • Lurking from June 

    Sorry you’re going through this. The only personal experience I can share is that my mom had an amnio when pregnant with me 30 years ago, and I’m obviously here and fine. I have to imagine doctors have gotten better at amnios since then. Sending good vibes your way! 
    Me: 30 // DH: 30
    TTC #1: July 2016
    BFP - Sept 2016 // MC - Sept 2016
    TTC #1 (version 2.0): May 2017
    BFP - Sept 2017 // EDD - June 2, 2018 // DD born June 6, 2018
    hlr8347
  • I’m glad that you’re doing well! 
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  • And I’m keeping you in my thoughts and hoping for good news from your amnio next week. 
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  • So glad for that result, but definitely keeping you in my thoughts and prayers. Especially while waiting for amnio results. Could you schedule a little treat for yourself like a foot massage or some selfcare around when you know you'll be waiting for results so you have a tiny sliver of something to look forward to?
  • Back when I was pregnant with my daughter she tested "positive" for Down Syndrome on my Quad scan (which wasn't as sophisticated as the genetic testing they do now.)  I was given something like  a 1 in 100 chance she had genetic abnormalities.  I needed to prepare myself and know ahead of time if there was something wrong so we opted to have the amnio.  

    I was way easier than I thought.  DH was able to stay with me the whole time.  I was 16 weeks during my amnio.  It was not painful at all.  I was told to stay off my feet and take it easy for 24 hours afterwards.  I was lucky that everything came back normal.  I was able to enjoy the rest of my pregnancy instead of worrying.  

    The "not knowing" part is the worst in my opinion.  I would get the amnio if it were me, but only you can make the choice that works best for you.

    Good luck.
    Pregnancy Ticker
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