Friday, August 12, 2011

Amniocentesis - What is it *really* like? - Part I

In all my research, I got an idea of the process of the actual amniocentesis. Nothing I could find, however, could prepare me for the entire 7 week process we experienced. I'd like to share it here with you, and with the world, for anyone else that is out there researching amniocentesis - scared and anxious.

Ultrasound at 1st NT Scan attempt - Head and shouldersUltrasound at 1st NT Scan attempt - Head and shoulders

Our story starts on June 23, 2011. The plan for the day included our OB appointment, including another try at NT scan, then to go identify my mother's body which would be waiting to be cremated. It was our first time to go to the Diabetic OB Clinic and we had no idea that we'd be treated like a herd of cattle! It was awful. I kept telling staff at each section that I really needed to be rushed through because I need to go identify my mother's body. Everyone was REALLY nice, but it seemed like I kept winding up at the back of the line.

Finally a doctor had me pulled aside for my Ultrasound / NT Scan. Not the U/S tech, the actual doctor! Everyone was really being nice, including her. Then during the scan she just stopped and turned to face me. She said "This is not a good day for you." My immediate reaction was that they still couldn't get a good read. (This was our 2nd attempt.) That wasn't it. NT is a collection of fluid at the back of the baby's neck. She went back to the view... it had been large enough that I hadn't even recognized it. This is where the tears began. I just lay there... holding Elmo's hand, crying.

Ultrasound at NT Scan - Upper ExtremitiesUltrasound at NT Scan - Upper Extremities

The actual U/S tech came in to do the measuring, so we were still stuck in there for a while. The Genetic Counselor came in to talk to us, then left and returned with a brochure about amniocentesis and a page each about Turner Syndrome and Down Syndrome. By the time we left the clinic, we'd been there for 2½ hours! Identifying my mother's body turned out to be pretty much the easiest part of my day.

Nuchal Translucency average measurement was 3.67. The largest was 3.99, which is the number that goes on the report. (2.9mm is the upper end of the normal range.) This extra space / water sac stretched from the back of our baby's head all the way to the rump!

Keep in mind, with an increased risk of chromosomal abnormalities, amniocentesis is still optional. The deciding factor for many is whether or not bad results would cause them to choose termination of the pregnancy. Elmo had made it clear when we got married that from that point forward, no child of his would be aborted. So it wasn't even an option to consider. However, I really wanted to know so that I could get the right support in place and know what to expect. Elmo also wanted to know so that we didn't fret for the rest of the pregnancy.

This is where the wait began. Our amniocentesis was scheduled for 6 weeks out. Just as we had to wait, this is where I make you wait. Please tune in next week to read about our experience with that 6 week wait.

Update: Part II has been posted - no more waiting!

11 comments:

  1. Um, wow. Can't say much more than that, I'm afraid. I really am glad you chose to do the amnio. It's a scary procedure, but knowing anything ahead of time gives you plenty of time to educate and prepare yourself.
    Lots of love and peace heading your way...

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  2. <3 It is so wonderful that you are sharing your experience to help support other parents who go through the same journey. I'm looking forward to reading the rest of your posts on this and hope that writing is/has been healing for you.

    ~Joella

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  3. I'm so glad you're sharing this! I'm sure it will help so many people.

    What an awful day, Jorje. You are one strong mama!

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  4. did you see me give a reader shout-out to you the other day??
    http://babynumber10.blogspot.com/2011/08/winners-and-reader-shout-out.html

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  5. I will definitely stay tuned for the rest of the story. I found you blog when I searched "down syndrome blogs" on facebook. I have a 14 mo. old with Ds. He is the greatest thing ever! I am also interested in all the other topics on your blog, like minimalism. Glad to have found you! Looking forward to reading more!
    My blog is:
    http://secondtimearound-vernyvern.blogspot.com/

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  6. @ April - Wow, so cool that you found me!

    I got started on minimizing our lifestyle in October... aiming for fitting into a travel trailer. :-) I've actually been keeping up with lots of little projects lately and posting regularly on Mondays about them (check out Monday Minimalist in my labels).

    Thanks so much for dropping by and commenting!

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  7. @ Patti - Oh! And thanks for letting me know! I went and commented on your blog. I had missed that.

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  8. You aren't alone. We found out at our 20 wk ultrasound that our baby has dilated ventricles in her brain, we are now 32 weeeks and found out she has out might have Acc of the brain. I blog too about all this but we elected not to do the amnio. You are in our prayers and we are hoping for a miracle.

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  9. 6 weeks is quite a wait! At our 20 week ultrasound our baby girl was diagnosed with an AV Canal defect and most likely Down Syndrome. We opted to schedule the Amnio and they were able to get us in that day! Just waiting an hour was torture so I wish you luck in your 6 week wait. But it will be worth it. Knowing that yes our daughter will have Down Syndrome has given us time to educate ourselves and begin to enjoy her! Good luck!

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  10. Thanks for stopping by ladies!

    Kaiti, why aren't you bloggin' about this stuff?? ;-) I can't imagine how lucky you are to have gotten in on the same day! But then again... they might have done that for us, if we were far enough along. We were still too early in the pregnancy to do the amniocentesis when we got the NT scan (11-12 weeks or so).

    Have you started reading Babies with Down Syndrome ~ A New Parent's Guide yet? I am devouring it and learning SO much!

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  11. Thank you so much for sharing. It must have been nerve-wrecking. Can't wait to hear the rest of the story.

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