Tag Archives: Down’s Syndrome

A rant on the California AFP test

While we were on vacation for a week we got a huge stack of mail, most of it junk. Amongst it all was a letter to me from the state informing me of the test results that I already discussed here. In California, the Alfa-Fetoprotein (AFP) test is covered by the state. I was informed of this in the letter and told that further testing and genetic counseling would also be covered by the state because of my positive test results.

Like I’m sure anyone in my position, my husband and I have been doing TONS of research on the test, the possible meaning of the results, and Downs Syndrome since finding out. Oddly enough, the more research I do, the better I feel.

For example, in an initial inquiry my husband found that the official false positive rate for the test is five percent. This percentage just didn’t sit right with me, however, when it seemed that almost EVERYONE I knew either knew someone or themselves had gotten a false positive from this test. Every positive test my midwife has seen has turned out negative. There was just no way that a mere five percent could be accurate for the false positive rate. So, I started looking into it and I found that the actual number should be much, much higher. Basically, they throw out any “false positive” if the person has diabetes, hyperemesis gravidarum (like me!),¬†miscalculations of cycle dates (like me!) and a whole host of other conditions and circumstances. If those cases were included and not thrown out, some estimates suggest that the false positive rate for the AFP test could be as high as 80 percent!

The more research I do, the more I am convinced that this test is completely bogus! Yet our state continues to pay for it (and most OBs make you feel pretty guilty if you refuse the test) and, as I found in my letter, further testing and genetic counseling upon a positive test result. Why put people through this test and all the worry associated with the results when those results are horribly inaccurate? It seems uncessary. Furthermore, why should the state pick up the bill for the test and more? This just seems ridiculous to me when we are in such a budget crisis that we are having to lay off law enforcement, teachers¬†and other important state employees, my sister and friends amongst them. And why should my tax dollars go to paying for some “genetic counselor” to tell me or other people that a life with Downs Syndrome is horrible and no life at all and it would just be better for everyone involved if I had an abortion?

So yeah, that letter just made me plain pissed off. End of rant.

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Filed under Family, Politics, Pregnancy and Birth, Ramblings

16 weeks + 3 days

Yesterday my belly finally popped out a little, but I don’t have a picture because I’ve been feeling like poop. I really hope this doesn’t give people the idea that they now have license to touch my belly. Next to morning sickness that is the part of the pregnancy that I loathe the most.

I’m normally a flat on my back sleeper, but as of last night that is no longer possible if I want to be able to breathe. So for the next 24+ weeks I have to endure the oh-so-uncomfortable side sleeping. I’m headed to Target today to get a new body pillow to make things a little better, my other one was ruined in the homebirth.

On Tuesday, I got a phone call from my OB’s office with some news. Now that I’ve had a couple days to process it I want to talk about it a little here, but first a bit of a background tangent…

Did you know that for pregnancy they count two weeks that you are not even pregnant as part of the gestational age of the baby? Well, they do. My midwife currently has a patient, Christian woman, never had sex before the wedding that got pregnant on her honeymoon and is extremely embarrassed by the fact that she has to include those extra two weeks in saying how far along she is because those two weeks were before the wedding and make it seem like she got pregnant before the wedding. I think I would be a little embarrassed too if I were in her shoes.

Why do they do this? I honestly think it is because most women have no clue about what goes on in their bodies and all they can tell you is that they bleed for a week every 28 days. So we base gestational age off of a woman’s last menstral period (LMP from here on out), rather than ovulation or conception date.

Most every calculation within the world of obstetrics and gynecology is based on this 28 day cycle and the fact that within that 28 day cycle most women are fertile and ovulate about two weeks after their LMP. The problem with using the 28 day cycle for all these calculations is that the 28 day cycle is based on an average. Some women have much longer cycles, some have shorter and within that some ovulate later in their cycle and others ovulate earlier in their cycle.

Now I’m sure you can imagine that if we are basing levels in blood work and due dates on this same 28 day cycle that it can lead to a lot of miscalculations. This is why you hear of women who were supposedly “over due” and thus induced by their OB, only to have a baby that is fairly small and developmentally not where they should be for a baby that is 40+ weeks. Or women who get an early hormone level test that is “off the charts” and are told they “must” be carrying twins only to find at a subsequent ultrasound that there is one baby in there and oh look it isn’t measuring where we think it should be measuring for how far along you are, let’s change your due date because you must be mistaken about your last period.

Despite plenty of research showing that every woman, every baby, every cycle, and every pregnancy is different the OB/GYN world insists on sticking to this average as a concrete basis for everyone.

I still think my new OB is great, don’t get me wrong, but let’s rewind back to my first encounter with him. Like most OB’s, he just couldn’t wrap his head around the idea that I knew when I ovulated and knew how far along I was based on that date. In he walked with his silly little cycle wheel trying to figure out how in the world I could only be 15 weeks pregnant with my LMP being March 15. My information did not work with the magic wheel. The fertility monitoring chart showing a very clear ovulation temperature shift with accompanying fertility signs meant nothing to him. I should have had an ultrasound in the first trimester to determine my due date if I don’t have normal cycles. I explained that I knew my ovulation date (April 6) and I was basing my due date off that.

Seriously, almost every basic online due date calculator has the option of putting in ovulation or LMP, why is it so hard for OB/GYNs to figure it out? For people that spent years in school and are supposed to be specialists in female fertility and anatomy, you’d think it wouldn’t be so hard for them to wrap their heads around, sheesh!

I mean really it isn’t that hard. If the average woman ovulates two weeks after their LMP and I know my ovulation date, then just go back two weeks from that date (March 23) and use that as my LMP if you must have a date for your calculations and magic wheel. Unless something is really wrong and there is major cause for concern an ultrasound really is not necessary people!

So anyway, the phone call from the OB. At my first appointment they drew blood for the second trimester screening panel. My doctor was calling to inform me that the blood work came back positive for Down Syndrome. However, he quickly followed that up with, “Well, since I didn’t have an early ultrasound to go off of with you that test was based on your LMP. The test is very specific to how far along you are and even if you are a week ahead or behind it will generate a false positive.” So I reiterated to him once again that I don’t have normal 28 day cycles and that the test is likely very wrong if it was in fact based on my LMP. He said that we’d know more at my big ultrasound where they could look for physical abnormalities and sure signs like heart defects. And, that if I really wanted to know for sure I could have an amniocentesis done. Sticking a giant needle in my belly and puncturing the amniotic sac just to know? Ummm no thank you.

Despite remaining calm and going through all the logical facts with my OB as to why I already knew the test was likely false, I of course broke into tears upon having to relay the information back to Stephen and then my sister who showed up two minutes after the phone call. I mean no one wants to hear or have to face the fact that something could be wrong with their baby. No one. But I’ve come to terms with it now and with the fact that even if the test is right, that we love this baby.

So that’s what I’ve been going through this week, among other things. As such, I am so looking forward to our vacation and being around people we love.

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Filed under Family, Parenting, Pregnancy and Birth