I said I wasn’t going to let the “advanced maternal age” boogey monster get to me. Well, I lied. I’m only human.
When you’re pregnant, the only news you want to hear is “everything looks great!” Anything less than that becomes an immediate source of endless hours of Googling, sleepless nights and what if’s. Unless you’re the most Zen person on the planet, that is. I’m not that person. I have a new found respect for those women who skip the genetic screening all-together. My experience with it this pregnancy put me on a roller coaster ride that I am just barely getting off of now. I am five months pregnant. That is a long time to wonder if everything is okay.
As I mentioned in a previous article, my experience with my first trimester screen was pretty odd. I’m 39, so I was approached as if I was some sort of dinosaur with dried up eggs attempting to have a child. After I was informed of the hundreds of genetic defects that a child that emerged from my old womb could have, I was offered a series of genetic tests to go along with the routine first trimester NT scan. I had such great results with my last pregnancy, I decided to decline. My last pregnancy was only two years ago so I figured, how much worse off could I be now?
The NT scan results give you the statistical probability that you will have a child with certain types of genetic disorders. I took the test in my last pregnancy and my probabilities were those of a 24-year-old woman – my results came back with a 1 in 1,300 chance. Two years later, my results were 1 in 81. All of a sudden my reproductive system really is 40 years old. Great.
A receptionist from my birthing center called me after she received those results to inform me that they had found some “soft markers” for genetic defects, and I should consider getting an amniocentesis. There was also a new blood test available that has almost the same detection rate as an amnio, without the invasive procedure of actually putting a needle into your uterus. I opted for that. She said she would schedule it. She never called me back.
So I called her back. She was visibly annoyed.
Her: Oh. Did I call you?
Me: No, that’s why I’m calling you.
Her: Oh, I figured you must be returning my call, because why else would you call?
Me: I’m calling because you told me some disturbing news, said you would book an appointment for me, and then never called me back.
Her: Well, I haven’t made the appointment yet – so I’ll call you when I do.
I called the perinatal testing unit and made the appointment myself, which I’m glad I did
because the woman actually never called me back.
I get to the perinatal testing center and see the technician that helped me at my NT appointment. She is surprised to see me there for a test that I had just refused mere weeks ago. I tell her that I was informed I had “soft markers” for a child with genetic disorders and wanted to get further tests done. She informs me that the receptionist from my birthing center never should have called me because the testing isn’t done. The first trimester screen is a sequential test. Two blood draws are needed to give accurate “statistics.” I haven’t had my second blood draw yet, so the numbers the receptionist gave me are wrong.
Great. So I’ve just spent the last week waking up in a cold sweat for nothing. I opt to have the more thorough Harmony blood test anyway, since I’m there and I just want to put all of this testing behind me. The technician tells me it is a “great idea” because it has an over 99% detection rate – without the invasive procedure of an amnio. She tells me if I’m getting it done then there really isn’t a necessity for the second part of the sequential screen because those results are much less accurate – but that it’s good to have both because the sequential screen can test to make sure the placenta is functioning properly. Again, I decide to just do both since I’m there and I want this all to be over with.
Three weeks and the holidays go by. Of course the testing is in the back of my mind the entire time. I’m having a hard time even accepting that I am pregnant. I don’t know if this is a coping mechanism brought about by all of my past problems with pregnancies, or if the stress of these tests is not allowing me to relax and bond with this child growing inside me. Whatever the case – it sucks.
I finally have the appointment at the birthing center to go over all of my testing results. I sit down with the midwife. She pulls out the results of the sequential screen and begins to speak in a lowered voice.
Her: The screen shows that your baby has an elevated risk for Down’s Syndrome. Your probability came out 1 in 255.
One in 255? I’m not really a math person, but those seem like some pretty good odds to me.
Me: Is there any way we can start with the results from the test I took that has a 99% detection rate, instead of the one that has an 80% detection rate?
Her: Oh. Let me look. (flips through chart for two minutes) Here it is. This one is saying you are low risk for all of the genetic abnormalities it tests for. But because of your age and poor OB history, I think you should still have an amnio.
Me: Really? Why did I even bother to take the other test if it is coming back negative and you are still recommending an amnio?
Her: I’m not a geneticist. I can’t interpret the results. But you know, you’re not 20 – you’re 39.
Me: If you’re not a geneticist and you can’t interpret the results, why the fuck am I here? It’s 25 degrees outside. I’m five months pregnant. I had to take a train here in the freezing cold to meet with someone for no apparent reason? Why didn’t you just make an appointment for me at the lab so I could talk to someone who could “interpret the results?”
Now I’m pissed to the point of crying, but I don’t want to cause a scene. I’ve already dropped the f-bomb. Against my wishes, she calls the perinatal center and makes an appointment for “genetic counseling.” I change the subject before I freak and tell her I’ll be moving to Florida soon and won’t be delivering at her birthing center.
She says, “You’ll never get a VBAC in Florida. You should fly back here to deliver.”
I inform her that I don’t think the airlines will even allow me to fly when I’m that far along.
She says, “you can take a train from Orlando to Penn Station.”
WHAT? I realize then that I am talking to a crazy person. I leave.
I call the perinatal center to talk to the woman who administered my tests and get some closure. I am sure that she is going to tell me I have nothing to worry about now because the test I took is over 99 percent accurate – and it’s time for me to just chill out. Surprise, surprise. That’s not what she says:
The Harmony test is over 99% accurate, but the amnio is almost 100% accurate. If you really want to be sure that everything is okay – the amnio is the only route.
I’m done. I can’t believe I did this to myself. I had read all of the stories of the women who had awful test results and went on to have stressful pregnancies for nothing because they had perfectly healthy children. I didn’t even have “awful” results and I was allowing myself to spin in this vortex of fear.
Well, I’m done. I’m going to stop being a stressed out pregnant lady and start being more of a mom to this baby inside me. And that starts with chilling out, trusting the universe a little, and realizing when I’ve allowed myself to be duped into every test in the book. By the way, I saw my insurance claims – it’s about $3,000 worth of blood work and tests so far. A 99% detection rate telling me everything is okay – and they’re still recommending more tests.
No. Just, no.