Friday, June 1, 2012

A Change of Plans and a Little Longer to Wait

Today the BabbyDaddy, my mom, and I braved rush hour to drive into the city for an ultrasound and an amnio. The Level II ultrasound was a go and clear of markers for Down syndrome, but I measured at 15.5 weeks along. The consulting doctor suggested my risk of amnio-induced miscarriage would drop if I waited a week or two because the chorionic and amniotic membranes may not be fused yet. For those not in the know - I certainly wasn't - poking the meganeedle into one's womb before the membranes have fused can cause "tenting". Heady stuff, no?

We ended up opting for the MaterniT21 screening, which has an accuracy rate that's roughly 1% lower than the accuracy rate of amniocentesis. Which doesn't, I'm somewhat appalled to say, guarantee I won't go back for an amnio because a prenatal karotype seems to me overall more reassuring (or definite) than a test that measures the ratio of free-floating fetal DNA in my bloodstream.

It's funny, really. If someone had offered me the MaterniT21 test first, before the triple screen, and it had given me a negative result for Down syndrome, I wouldn't have questioned the results. Just like how with P. I never questioned the good numbers on the triple screen, even though P. had bilaterial choroid plexus cysts early on. But with the initial Down syndrome risk on the triple screen, even with an ultrasound showing no markers for DS, I'm leery of taking the results of the MaterniT21 test as gospel. Even though the accuracy rate is way up there and, according to the doctor, the tech has been around since the 90s but it's only now that it's approved for consumer use.

*sigh*

If you were me, what would you do? Trust a negative result on the MaterniT21 test - if indeed my result is negative - or go whole hog and schedule the amnio anyway? I'd definitely welcome your input!

22 comments:

  1. Do I understand that you would carry the baby to term, regardless of the result? If so, then I say go with the less invasive and safer MaterniT21 and trust the results, either way. Amnios scare me (though I'm known to be a nervous nelly). Good luck, either way. The ultrasound is good news!

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    1. Thank you! Oddly, I don't find amnios as scary as most folks, but my grandmother owned a genetics lab where they did thousands of them. My brain interprets it like 'just one step up from a blood draw', which isn't strictly true.

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  2. It seems like you are looking for peace of mind so I think it would depend on whether the other test would give you that. (This said from a person who refused a level two ultrasound after Judah had a Downs marker in my first one because the outcome was going to be the same for me either way). Great news in your ultrasound and we'll continue to pray for peace and wisdom for you!

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    1. I have literally no idea whether the test will give me peace of mind - I'm actually feeling more peaceful now, though, simply because I feel like I *did something*. And now, we wait :)

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  3. I wholeheartedly believe that this is such a personal decision that advice can only go so far. It comes down to what is in your heart and mind as to the best thing to do. Weighing the worry of not knowing vs. the worry of potentially knowing... that's something only you and your husband would be able to do. I went with super limited pre-natal care and testing with my last child, because I knew, for me, not knowing was okay and I'd deal with whatever life handed me when the baby arrived. That was my choice, and I lost a great birth provider because of my refusal for any tests. For me, it was better to not know. You are in my thoughts and prayers and I'm sending you positive energy every day.

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    1. That's so uncool that a provider wouldn't accept your wanting to forgo testing! That's one of the things I really like about my midwives - they accept everyone, whether they're all-natural and super low key or tech-happy and high maintenance :)

      Thank you for the prayers and thoughts and positive energy!

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  4. Nada...we did not do any testing blood, genetic etc. I wanted a zero intervention pregnancy and birth. Not even an ultrasound. I was so thrilled (after years of waiting) to be preggers and I did not want any stress.
    (we ended up having to do a level two at 36 for weeks for a heart issue that developed at 34 weeks) those two were weeks were hell!!!!

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    1. Zero intervention! Wow, that's awesome. And also something that I, a mega worrier, could never do without getting to the point of running up and down walls. It's funny how what constitutes stress free is different for everyone. I'm sorry that going totally intervention free didn't work out for you - but I also hope it all worked out.

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  5. I'm a few years out from ever dealing with this, so take my perspective with a tablespoon of salt...I would wait until it's safer, and then have the amniocentesis (does it also detect other fetal issues, besides Downs Syndrome?). That's because I'd want to be prepared ahead of time, because I think fear is worse than knowledge of something you're not thrilled about.

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    1. An amnio will catch all kinds of chromosomal abnormalities if they exist - Trisomy18, Fragile X, and a whole bunch of incredibly rare stuff if it happens to be there. It's quite the peek into a baby's genes!

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  6. If what you need to know is whether or not there is a DS risk, I'd stick with the less invasive but equally reliable test. If what's going on here is that you're anxious about this pregnancy (no, if you ask me, duh) go ahead and do every goddamn test in the book until you can sleep well at night. I mean, test it for dyslexia and dust allergies, for all I care. Seriously. xx

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  7. I think for peace of mind I'd schedule the amnio at a later date. Two negatives would definitely feel more reassuring and if it is positive, well, then at least you know for sure instead of having 'what if it's wrong' anxiety for the remainder of the pregnancy.

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    1. It's what I'm leaning toward, but I have 10 business days to think about it - or not :)

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  8. I think I would schedule the amnio for when it is safer. Then you can definitively stop worrying. Hang in there!

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    1. Thanks, Jenny! That's the way I'm leaning, but the BabbyDaddy (and my mom) are confident about the MaterniT21 test. I guess I just have to decide.

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  9. Well, you did ask :)

    I would do nothing. The results don't matter to me... there's nothing I would need to know *at birth* that I couldn't spend the next 50 years googling and figuring out. But clearly, you're not into this approach :)

    Honestly, amnio makes me nervous. But if you're going to do it, since you've miscarried before... yes, I would certainly wait.

    But don't take my comment above as judgmental. You can do what you want! I also only drink skim milk because the other stuff chokes me, but I love all kinds of milk-drinkers :)

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    1. Oh my, yes, I am the LEARN EVERYTHING EVER AHEAD OF TIME PREPARE PREPARE type :) But it takes all kinds! (Of milk drinkers, hee. I like how that sounds - I think I'm going to integrate it into my vocab.)

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  10. I have been thinking about you and praying for your peace of mind.

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    1. Thank you! I'll take all the thoughts and prayers I can get!

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  11. I think for me the thought is this, regardless of the results will it change how much you love the child? Will it change your mind on WANTING your child? I don't think it will - so go with the results you have and know that no matter what your child is LOVED and PERFECT in every way. A silly test, or yes even a disease like Down's does not indicate a child is "damaged goods" but simply a special gift for a very special family.

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  12. The last time I was pregnant, in 1983, genetic testing was still a toddler, and now it's more of an older teenager. I already had 6 healthy kids, and then this surprise at 36! Her dad had one older brother that had died from Cystic Fibrosis, and a brother AND a sister with severe mental retardation. I was a wreck, and wanted to know as much as possible. I had had bleeding on and off....severe at 12 weeks, and opted for an Amnio. The first time I went, there wasn't enough amniotic fluid showing on the ultrasound, so I had to wait (the longest)3 weeks of my life to go back for another try. It was pushing the envelope of time limits. When we went back, the fluid the doctor pulled up had blood in it from all of my bleeding. I asked if it would cause any problems with the culturing, and he said no, it just might take longer(longer? wtf)but we went ahead. The five weeks we had to wait for the results were the longest of my life, but the peace of mind it brought me was amazing, especially after all the bleeding. I don't know what I would have done if the results had been anything but normal, but thank goodness I didn't have to make that decision. Today she's 28, working on her Masters in Library and Informational Sciences, and dating a great guy. I say do whatever it takes to give you as much peace as you need.

    xo Linda

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