Elderly gravida: the amniocentesis

Ok, so where was I? Right, right. Phone call, genetic information, crying, amnio scheduling.

Monday, September 12, 2011. The genetic counselor told us our odds were not on the awesome side of where we wanted to be, so she had gone ahead and scheduled the amniocentesis. Now, this is where I began to get a little annoyed with the universe. You see, we had the first trimester screening when we thought I was just under 13 weeks along. A CVS procedure, which gives you results that are similar to an amnio (but not nearly as comprehensive), can be done up until a woman hits week 14. We had thought there would still be time to do the CVS if the results from the screening test came back not-so-great. We were wrong. Because the ultrasound portion of the screening test changed our due date, I was now just a few days past the 14-week marker, so a CVS was off the table. Although the amnio can give more answers, it cannot be done until after 16 weeks of gestation. So, as I said last week, now we were in for a wait. Two weeks felt like two years. I must have googled ‘amniocentesis,’ ‘1/87’ and ‘does my baby have Down’s Syndrome?’ every day. Almost immediately upon learning I was pregnant, I was bombarded with information about the tests available and suggested (or, it sometimes seems, mandated) for a woman of my advanced maternal age. When I had read about amnios earlier, I got nervous. The procedure itself didn’t sound awesome — a needle through my belly into my uterus to extract amniotic fluid — but it was the risk of miscarriage that scared me. As we approached the date for my amnio, though, I really held almost zero fear about the actual procedure or the risk. I had read that although the risk of a miscarriage is often cited at about 1/300, the actual risk is really much lower, particularly in a hospital in which the procedure is done frequently. So, when we finally went in for the test, I was nervous only about the results.

Monday, September 26, 2011. The cool thing about the amnio is that you get to see your baby again. After 45 minutes of genetic ‘counseling,’ at which we saw the breakdown of the first trimester screening numbers and were shown a diagram of what the amnio would look like (Aaron nearly passed out at the sight of the cartoon needle), we were ushered back into an ultrasound room and the warm jelly was again applied to my belly. And poof! There was baby again! The baby definitely looked bigger than the last time we had a viewing and, to me, the baby looked healthy and content. Only a few minutes went by before the ultrasound tech asked us if we had wanted to know the baby’s gender. We indicated yessirree and the woman gave us the most wonderful news: we were staring right at the baby’s girl parts! That’s what she told us the scientific name is: girl parts. We were, and are, so thrilled. After many more minutes of the tech taking a million measurements and poking at the baby through my belly, two doctors came in to meet us, a man and a woman. The man must have been some sort of resident or something, though I did not catch his role, because he was clearly taking instructions from the others. The woman was nice enough, though she seemed as though she may have done this one million times before and did not find the procedure nearly as significant as we did. After some pen marks were made on my stomach, the man poked me with a needle a fraction the size of the cartoon needle that had made Aaron woozy minutes earlier. The man had also given me a poke with something that was to numb the area, but he admitted he wasn’t sure it would help much. This is because, I assume, most of the discomfort comes from when the needle hits the uterus, not when it goes through the stomach. I had read people describe the sensation as akin to menstrual cramps, but I’m not sure I’d call it that. It wasn’t exactly painful, but it didn’t feel great, either. I would say it felt uncomfortable and tight and prolonged. Three different vials had to be filled with amniotic fluid; I think two were for the full chromosomal testing and one was for the FISH test (see below). After the vials were filled, the doctor took the needle out and we were done. Simple as that! Well, and then we had to wait. Again.

In the weeks after receiving the first trimester screening results, I had read that people have to wait a week or two for the full results from the amniocentesis are available. But I also read that there is a special test, called FISH, that can be done in some areas and which gives a couple their results much faster. The FISH test takes the cells from the amnio and injects some sort of illuminator into them, which illuminates chromosomes 13, 18 & 21. If the test shows that those three chromosomes are present in their normal form — just two of each — then presto! There goes your risk for Down’s Syndrome (Down’s Syndrome is diagnosed by an extra chromosome 21; an extra chromosome 13 and 18 represent different, far less common, disorders)! I didn’t know if Meriter offered the FISH test, but I was hopeful. About halfway through the counseling session that immediately preceded the amnio, I asked how long the wait for results would be. Our counselor then told us that the FISH test was, indeed, an option. She said that we could have it done, but she could not guarantee that insurance would pay for it and it could cost us about $1000. Now, we don’t exactly have an extra 1k sitting around gathering dust, but if there was anything we could do to speed this process along, I was all for it. Sign us up, we said! We were told the amnio results would be ready in seven days (not business days, but seven actual days — I made sure to clarify this) and the FISH results would be ready in 48 hours.

So, after the amnio, we went home and I laid on the couch. What else is new, you’re thinking. I know, I know: not much. Anyway, I took the next day off from work just to make sure that there weren’t any side effects from the test (some women experience cramping, bleeding or loss of amniotic fluid but I experienced nada, really) and, frankly, to relax since the last two weeks had been filled with nothing but anxiety and panic. I had been hoping the FISH results would come back early, but no dice. Tuesday came and went and we still did not know if our baby had Down’s Syndrome.

Wednesday, September 28, 2011. We went to work and tried to go about our day. I became really busy in the morning — drafting some sort of unexpected motion, returning a couple of phone calls to a judge’s chambers, etc — but then things turned back to my normal course of work-life, which entails writing and thinking and researching and reading and thinking and writing and thinking. Too much time for thinking and my mind inevitably wandered. Aaron & I walked out to the farmers’ market and took a couple of loops around. I gripped my phone the entire time, willing it to ring. It didn’t. Finally, at about 2:45 pm, rapidly approaching the 48-hour anniversary of the fluid-taking, I called the perinatal center. Well! From her voicemail message, I quickly learned our genetic counselor does not work on Wednesdays! You’d think she could have mentioned this when she said, “If you have any questions, call me” and “Your test results revealing a large part of your baby’s future will be available in 48 hours.” Anyway, I finally reached the “on call” counselor and she was extremely nice; her voice instantly calmed me. She told me FISH results are not reported until the end of the day, but she would make sure to call me as soon as they came in. I breathed a sigh of relief. Although we still had waiting to do, I was pretty sure we were in the home stretch. Of course at this time, there was a knock on my unusually-closed office door. It was my secretary, asking me to sign a motion or something that I had given her earlier. She asked me to remind her what test I had done and what the results I was waiting for would tell us. I relayed the information, to which she oh-so-helpfully told me, “Oh, I would never do that test. I mean, what difference would it make? It’s not like you can do something about it.” I gritted my teeth, tried to remain calm and tried with all of my physical and mental will not to stand up and hurl myself at her throat. I succeeded. Instead I smiled curtly and said, “Well, I need to know.” There was another interruption at this time when a colleague, seeing my open door, started to rant about something so ridiculous that I cannot even bring myself to print it here. Suffice it to say, it was along the lines of complaining about the color of the elevator buttons in an elevator she has never had to ride in. I mean, it was nothing. And it was driving me crazy. My baby might have a chromosomal disorder! I have real problems here, people! Stop talking to me and let me go back and hide behind my “I should close it more often” office door. Soon – though let me emphasize not soon enough — the counselor called me and said, “Kate, I have great news.” And I then became so happy I thought I would burst. After telling me the baby’s chromosomes looked great, she said, “Now, did you want to know the gender?” I said we did want to know, and the ultrasound tech had told us what she thought the baby was. The counselor said, “Would you like me to confirm or deny that information?” I said, “I would really like you to confirm it!” And confirm it she did: two X chromosomes on Baby! I was elated. After I hung up the phone, I immediately went into Aaron’s office smiling, hugged him, told him the news and burst into tears. What a relief.

We had to wait longer than seven days for the full results, though. In fact, we did not get the full results back until Wednesday, October 5. The full results also came back normal, which was another great weight off of our shoulders. While the waiting on that information wasn’t fun, it was nothing compared to the two weeks we waited for the amnio, and the 48 hours that followed that. I know many people would, and do, decline these tests and I know that they do so for a variety of reasons. And while I do not wish the stress of what we went through on anyone, the knowledge we have gained — and at least our momentary peace of mind — is invaluable to me. Right now, I am actually enjoying being elderly gravida. My baby girl is growing and breathing and moving (though I can’t feel her yet) and has all her chromosomes in all the right places. The worry button has been reset to DefCon 3.

I’m sure I’ll ratchet it up again as we go into the 20-week ultrasound.


18 Responses to “Elderly gravida: the amniocentesis”

  1. 1 Terry October 18, 2011 at 8:53 am

    Hooray for Part Two!! This was like reading the script for a movie I had previously watched from a cornfield outside a drive-in movie. So although I had a fuzzy idea before of your story this is SO much better than late night texts! So happy for the two of you! Welcome back to normal parent angst! Love you and my new great niece!

  2. 2 Jane Roe October 18, 2011 at 9:39 am

    Great job of capturing the fears I assume all women have (except perhaps the very young) upon finding out that they are pregnant. Having used the “drive-in window” approach with Tim, I never experienced all these issues and fears. I have tried my best, however, to catch up on the fear/concern factor I missed early on, with approximately 31 years of worrying:) I used to hate it when my mom would worry about stuff and wonder why she didn’t just relax. Then I became a parent. I don’t think that the worrying ever really ends.

  3. 3 Sara H October 18, 2011 at 10:50 am

    So glad baby girl is wonderful! Isn’t it just amazing, the stuff you can see on those ultrasounds? I figured that you knew it was a girl if there was the absence of boy parts, but you actually see the girly bits.

    Did you opt into genetic counseling at the outset?

  4. 4 kateandgracie October 18, 2011 at 11:58 am

    Well, see, that’s a good question. I guess we must have opted in, but what I remember — which is probably a false memory — is more of the, “And then you have to make an appointment here…And then here…And then here.” But, now that I think about it, yes, I suppose we must have. I honestly thought the first trimester screening would probably come back fine and that would be the end of it. I’m guessing, Sara, that maybe you opted out? We have a friend that’s currently preggo and she has opted out of all — no screening tests, no amnio, no ultrasounds. They won’t know the gender until the little pumpkin comes out; they won’t know get a look at the pumpkin until then, either! That is just not me — I need to know! Well, I suppose I don’t NEED to, but I feel like I do. I’m a total worrier by nature and the more I know that can assuage my fears and neuroses, the better. Or maybe not ‘better,’ but I’ll take it.

    And I do figure that this is probably just the warm-up for all things parenting: the worrying has definitely begun.

  5. 5 Sara H October 18, 2011 at 2:51 pm

    I had what must have been a really weird prenatal care experience. Despite my advanced age, my doc never once whispered a word about genetic screening and mostly just reiterated that pregnancy is a natural part of being a woman. It was very hands off (in fact, I was kind of entertained by the idea of “excellent prenatal care” – other than my 20 week ultrasound, I kind of felt like I went in, they checked for a heartbeat, gave me a high five and said see you next time). I rather appreciated this, because there really seemed to be less to worry about. Perhaps it was more like I was a willing participant in blissful ignorance. When I had my ultrasound, the hospital tried to get me to do genetic counseling, but I declined, figuring if my doc didn’t see the need for it I should pass. At that point I felt more like they were trying to get some billings out of me more than anything. But maybe my doc is just weird. I am fascinated that there are such disparities in the practice of individual doctors.

  6. 6 kateandgracie October 19, 2011 at 9:56 am

    That is so interesting! You know, I was thinking about it last night and felt like I wasn’t taking enough responsibility for my choices in my earlier comment…I’m pretty sure that we were consulted about, and certainly agreed to do, the genetic stuff. Like I said, I wanted answers if they were available. That said, I do think that there was somewhat of a push…Maybe we weren’t pushed because we were already going that route, but if we had been others who were more reluctant, I think it would have been safe to call it a push. In fact — and how could I forget this! — the first nurse I saw was sort of pushing CVS before I even had the first trimester screening. She also gave me incorrect information, telling me that if I did the first tri screening, I actually could not do the CVS. I left the doctor’s office confused, read a bunch of info at home, talked to Stephanie (who I knew had gone through some of this) and called back…That time I spoke to a much more knowledgeable nurse who said, “Yes, of course you can do the first trimester screening. Call the perinatal center and they’ll set you up.” Phew.

    Gosh. I can’t believe how much I have already forgotten about the stress of this process. Anyway, I got the feeling that maybe there pushes were to bill more, but I also sort of felt like they were more just science people who wanted to look at as much stuff as they could. Anyway, I’m glad we did it but, like I said, I can certainly understand why people pass it up.

  7. 7 Raoser October 19, 2011 at 10:57 pm

    Whew! What an amazing and highly stress-inducing experience. It’s bad enough to know so much is out of our control but to know the little tiny girl’s safety and health is out of your control is just too much to bear.

    I would have opted for the FISH test, too. I also think it’s time to get you a “Do Not Disturb” sign, or perhaps, “Out of the office.” Something along those lines would seem preferable to rants by the unaware or unsolicited advice.

    Just keep blogging every step of the way, please. Thank you.

  8. 8 Sara H October 20, 2011 at 8:52 am

    I cannot tell you how many times I heard conflicting information… most often between my doctor and the woman who taught the breastfeeding class.

    Agree, you need a regular office and then a secret office where no one can find you.

  9. 9 kateandgracie October 20, 2011 at 4:23 pm

    Secret office! Genius.

  10. 10 Mary Lloyd October 21, 2011 at 9:57 am

    i sure hope that last half of the pregnancy is full of fun and joyful anticipation. Can’t wait to go shopping with you and look at baby stuff. So fun. coming up soon!

  11. 11 kateandgracie October 21, 2011 at 10:12 am

    I know! I look forward to that stuff very soon…I need some tips on times to buy things.

  12. 12 Sara H October 25, 2011 at 8:56 am

    Need a copy of Baby Bargains?

  13. 13 kateandgracie October 25, 2011 at 1:18 pm

    I would say immediately, “YES!” but I don’t know what it is. I should be embarrassed, I’m sure. Ok, off to google this mystery!

  14. 14 Sara H October 25, 2011 at 1:38 pm

    Nifty book which I thought was useful because it would tell you the less expensive things that also were safe and of good quality. As in, I got the cheapest crib recommended by the book (and have been perfectly happy with it). Carried it around in my purse for a few months. (the book, not the crib.) Also tells you what stuff you really don’t need. There might be a more recent version than mine, but otherwise you are welcome to it!

  15. 15 Sara H October 25, 2011 at 1:39 pm

    And hopefully I did not offend you by assuming you would be interested in “cheap” stuff. 🙂

  16. 16 kateandgracie October 26, 2011 at 10:05 am

    Hahaha! Offended by “cheap?” Hardly! I love the sound of it! I googled it yesterday and up came the book and now I think I will order one and carry it around, as well. Hope you aren’t offended by me copying you because, I have to say, I intend to copy people left and right when it comes to this baby stuff. Well, within reason, of course. I promise not to copy your name for your pumpkin and I promise not to intentionally dress my pumpkin in your pumpkin’s image. After that, I’d say all bets are off.

  17. 17 Sara H October 27, 2011 at 9:02 am

    I’ve got my copy in the car if you’d rather just borrow! Copying is key, how the heck else does anyone know what they’re doing?

  18. 18 kateandgracie October 27, 2011 at 10:10 am

    No kidding in re: copying. Well, let me ask you this … and I should probably just email you so that is what I’ll do!

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October 2011

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