So, early February, (almost typed earlier this month, which, if I had written this when intended, I could've just went ahead and did) we had our first ultrasound to take a look at tiny human. This was also the first visit that Grey came with, seeing as the first doctor's visit was to fix my fun vomiting problem, and the second one was mostly my OB taking samples from various places and telling me my uterus felt "spongy."
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| I still don't know if I want to know what that really means. |
As this was going to be the first time we actually got to put a grainy, black-and-white kinda face to our baby, we were both pretty excited when the ultrasound tech brought out her magic wand and luke-warm gel. I roll up my shirt, she turns on her fancy machine, and BAM!
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| Behold, the cause of my nausea and Indian food cravings! |
To be perfectly honest with you guys, although this was a great moment, it wasn't emotionally overwhelming or anything. I was prepared from various sources that I would instantly be brought to tears upon first sight of our baby, but it didn't happen. Part of this was that I wasn't feeling that great, and the other part was that an ultrasound kinda makes everything look like a morel mushroom.
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| Behold, the cause of my nau...wait a minute... |
While Grey and I were making inappropriate mushroom jokes, we did notice the ultrasound tech was taking an awfully long time. Grey even asked her after a while if everything was alright, to which she responded, "We don't actually do any analyzing here, but your doctor will let you know how things are progressing."
Remarkably, that did not lower any sort of anxiety.
Cue fifteen minutes later, and my OB comes into the room, holding a clipboard and a brochure. She takes a deep breath, then tells us that our ultrasound was not good. It revealed that our baby had a high nuchal translucency score. If you're so inclined, you can find more information about NT scores here, but basically it is a measurement of the fluid underneath the skin behind the baby's neck. An increased measurement level can be a sign of a serious chromosomal disorder. So, insanely scary news.
My doctor then hands me the brochure, which is for a test called MaternitT21. It's a blood test that can determine with a much higher level of accuracy if our baby does in fact have one of three major chromosomal disorders. The most common, which the test gets the name from, is Trisomy 21, Downs Syndrome. The other two, which are less common, are Trisomy 18 and Trisomy 13. These two, unlike most Downs babies, are pretty much guaranteed fatal within a few months of birth.
Anxiety levels, which were high, zoomed up to numbing levels, fueled by a few extra millimeters of fluid and a brochure.
We were left to call our insurance to ensure that the test would be covered (which it wasn't, initially), and then the nurse came in to talk with us some more. Before I launch into my rant about this fun talk, let me get a bit clinical about soft factors, chromosomal anomalies, and genetic testing.
This is the thing about NT scores; it is a soft factor. This means that it shows an increased chance of a chromosomal disorder. It, by no means, is a guarantee. Upon further research, this translates to the following - my baby, before we had the ultrasound, had a .09% chance of being born with Downs (sticking with statistics with Downs, since it is much more common than the other two). After the ultrasound, we discovered our chances went up to 2-10%, depending on the study we looked at. A significant jump, yes, but if there's a 90% chance of getting ice cream, versus a 10% chance of not, I'm going to buy some ice cream cones.
The nurse who came in did not tell us these statistics. She just told us that our baby was much more likely to have a chromosomal disorder. When we asked for more information, what we got was one anecdotal story about a woman whose baby had a high NT score who ended up having Downs, and a "reassurance" that the ultrasound techs are "very good and do not give false positives."
Here's the situation; I realize that statistics and numbers tend to be bad in the hands of humans. We tend to bend them in the direction of our favor, and they are not as reliable as we'd like them to be. However, when it comes to medical issues like this one with our baby, I don't see how one story about a woman who could be any age, and come from any background, ending up having a baby with Trisomy 21 is supposed to be any better.
If my nurse's choice of bed-side manor was not simple mishandling, and instead, a push to get us to take the blood test, then that's unnecessary. I wanted to do all the screenings I possibly could for our baby, because I am a control freak and knowledge makes me feel better. I don't need any pushing one way or the other.
Cue fifteen minutes later, and my OB comes into the room, holding a clipboard and a brochure. She takes a deep breath, then tells us that our ultrasound was not good. It revealed that our baby had a high nuchal translucency score. If you're so inclined, you can find more information about NT scores here, but basically it is a measurement of the fluid underneath the skin behind the baby's neck. An increased measurement level can be a sign of a serious chromosomal disorder. So, insanely scary news.
My doctor then hands me the brochure, which is for a test called MaternitT21. It's a blood test that can determine with a much higher level of accuracy if our baby does in fact have one of three major chromosomal disorders. The most common, which the test gets the name from, is Trisomy 21, Downs Syndrome. The other two, which are less common, are Trisomy 18 and Trisomy 13. These two, unlike most Downs babies, are pretty much guaranteed fatal within a few months of birth.
Anxiety levels, which were high, zoomed up to numbing levels, fueled by a few extra millimeters of fluid and a brochure.
We were left to call our insurance to ensure that the test would be covered (which it wasn't, initially), and then the nurse came in to talk with us some more. Before I launch into my rant about this fun talk, let me get a bit clinical about soft factors, chromosomal anomalies, and genetic testing.
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| We could all use a cute kitty picture right meow. |
This is the thing about NT scores; it is a soft factor. This means that it shows an increased chance of a chromosomal disorder. It, by no means, is a guarantee. Upon further research, this translates to the following - my baby, before we had the ultrasound, had a .09% chance of being born with Downs (sticking with statistics with Downs, since it is much more common than the other two). After the ultrasound, we discovered our chances went up to 2-10%, depending on the study we looked at. A significant jump, yes, but if there's a 90% chance of getting ice cream, versus a 10% chance of not, I'm going to buy some ice cream cones.
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| Congratulations, Sylvia, here's your terrible analogy trophy for the day. |
The nurse who came in did not tell us these statistics. She just told us that our baby was much more likely to have a chromosomal disorder. When we asked for more information, what we got was one anecdotal story about a woman whose baby had a high NT score who ended up having Downs, and a "reassurance" that the ultrasound techs are "very good and do not give false positives."
Here's the situation; I realize that statistics and numbers tend to be bad in the hands of humans. We tend to bend them in the direction of our favor, and they are not as reliable as we'd like them to be. However, when it comes to medical issues like this one with our baby, I don't see how one story about a woman who could be any age, and come from any background, ending up having a baby with Trisomy 21 is supposed to be any better.
If my nurse's choice of bed-side manor was not simple mishandling, and instead, a push to get us to take the blood test, then that's unnecessary. I wanted to do all the screenings I possibly could for our baby, because I am a control freak and knowledge makes me feel better. I don't need any pushing one way or the other.
The main reason why I decided to go so in depth with this post is for anyone else out there who may run into this problem too. I had to dig for the info that I found, and finding clinical data versus emotional debates about the testing itself was not fun to slog through while crying over a red pepper bisque soup at a local cafe. (Grey and I like to eat when we are sad, and the soup at that one place is freaking amazing.)
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| And yes, I am an ugly crier. Thanks for noticing, all other patrons of Pekara. |
At the end of the day, with more information and statistics under our belt, Grey and I were able to sit down and actually discuss what we were really dealing with; an increased chance, but ultimately, still a small one. So, we talked about what we would do in each situation, and really, after fully thinking about it and actually having a plan in place for what we would do, good or bad, I felt much, much better.
From this point on, I am going to be fairly straight forward with my OB regarding wanting medical statistics and more information. I consider myself a pragmatist at heart, and in terms of my baby, being armed with knowledge is going to be much better for me and tiny mushroom-look-a-like. I need to have something to lean on besides my own emotions and a few anecdotal stories.
So, after a 72 hour waiting period, which is what my insurance considers to be "urgent rush pre-approval scheduling," I went and gave blood for the MaterniT21 test. Then it was a matter of just sitting and waiting a week for the testing to be completed by a lab in California.
Which totally sucked by the way. A week is a long time, especially in terms of your baby.
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| Maybe if I eat my laptop, time will go by faster. |
Then, a week passed, and I got a phone call from my nurse.
Due to the snow, my blood took an extra four days to get to the lab. So, it was going to be another week before we got results.
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| Alright, we're doing this. |
Then, another week passed.
My phone rings.
And, drum roll please?
Dundundundundundundun.
Negative, across the board.
Overall, though, I am still really happy that we live in an age where this type of non-invasive testing is even possible. The thing is, at this point, we still had options and choices open. Giving parents this kind of information so early in a pregnancy, though stressful in the short term, really does help. Because of the blood test, the next step after the bad ultrasound didn't have to be an amniocentesis, which, for those who don't know, if a procedure where amniotic fluid is gathered from the fetus though, collective cringe, an obscenely long needle straight through the abdomen. Not only is this procedure painful, but it does up the chance of miscarriage slightly. I still would have done it, to be honest, but it was nice not having it be the only option.
Here's some links to a few articles I found that also talk about this newer genetic screening that I had. I take offense with a few people who were quoted - one of which who said, "I think regulators, legislators, doctors, will have to make some hard decisions about what kind of information they want give parents.." - because people who are mature enough raise a child are not mature enough to handle information regarding said child's health, right? Besides a few quotable jerkwads, though, it's mostly still great information.
I will stop my ranting. Here's some links: One, Two, and Three
One last thing about the test results.
It lets us know the gender of our itty-bitty human.
We're having a girl!
My phone rings.
And, drum roll please?
Dundundundundundundun.
Negative, across the board.
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| No caption necessary. |
Overall, though, I am still really happy that we live in an age where this type of non-invasive testing is even possible. The thing is, at this point, we still had options and choices open. Giving parents this kind of information so early in a pregnancy, though stressful in the short term, really does help. Because of the blood test, the next step after the bad ultrasound didn't have to be an amniocentesis, which, for those who don't know, if a procedure where amniotic fluid is gathered from the fetus though, collective cringe, an obscenely long needle straight through the abdomen. Not only is this procedure painful, but it does up the chance of miscarriage slightly. I still would have done it, to be honest, but it was nice not having it be the only option.
Here's some links to a few articles I found that also talk about this newer genetic screening that I had. I take offense with a few people who were quoted - one of which who said, "I think regulators, legislators, doctors, will have to make some hard decisions about what kind of information they want give parents.." - because people who are mature enough raise a child are not mature enough to handle information regarding said child's health, right? Besides a few quotable jerkwads, though, it's mostly still great information.
I will stop my ranting. Here's some links: One, Two, and Three
One last thing about the test results.
It lets us know the gender of our itty-bitty human.
We're having a girl!
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| And now to find the schematics of this costume... |
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