Wednesday, December 12, 2007

Need a little help figuring this out!

So we have more good news and some puzzling news, and I'm hoping some of my science buddies can give me a hand?

After I had the nuchal test, I went down for the blood test to the lab, and they sent it off. I had some results pretty quick, but they only print out the results for Down's on the printout and I also wanted the risks for Trisomy 18 & 13 and well any numbers they can get me, right?

Now realistically, the nuchal test is the only thing that matters when we discuss the health or chromosomes of the baby. It's the biggie. The blood tests, the Papp-A, the free beta hcg, the inhibin A, all the rest of them, only point to placental health, which can be an indicator of fetal problems but not a guarantee one way or the other. This is why most of the blood screening tests have such a high false positive rate btw, because while it is possible to have a damaged placenta and a healthy baby with no anomalies, it's almost completely impossible to have a totally healthy placenta and a baby who has serious birth defects. (And I'm not excluding situations like molar pregnancies, where you have a placenta that works and no baby at all, just a sac, really. The placentas work for a while, but structurally they are still bad, which is why they fail eventually.)

Unfortunately, my history has gone for almost every variation. Healthy kids - my boys, who had iffy placentas, but by some random chance, lived. Matthew, who was chromosomally damaged, and had a bad placenta, and died. Georgia and Mira, who were chromosomally perfect, no birth defects, no problems, but whose placentas were so very damaged that they had absolutely no hope of ever making it, and died in utero.

So now, I'm staring at the damn numbers and the genetics people have told me they are great for chromosomes, and I'm thinking, whew....one hump over, and now the next hump, what about my placenta? So if any of you can tell me or give me links to charts or figure out what these numbers mean for my placental health or risk of miscarriage or IUGR, or well any old outcome, I'd be so grateful, I'd have your baby!!! Whoops, scratch that, not my best skill----errrr, I'll give you lots of hugs and blogkisses!!!!!

Or something really really neat!!!!

And yes I'm supposed to meet with Dr.Placenta next week some time but that's freakin' NEXT WEEK. I can't wait that long.

So at 12 weeks, 1 day DinkyPie's numbers were:

CRL - 65 mm
NT - 1.3 mm
BPD - 19mm

Free beta hcg was 21.3 iu/l (international units per litre) leading to a risk factor they call Multiple of the Median or MoM of 0.53.

PAPP-A was 1.98 iu/l leading to a risk factor of .66 MoM.

(Yes, the ratio is called MoM, literally what is the risk we will or won't get to be a Mom. Why do I just freakin' KNOW a non-Stirrup Queen decided to use that acronym for this criteria? *eyeroll*)

If an average 39 year old woman had these numbers she'd have a risk of Down's that is 1 in 5290, and a risk of Trisomy 18 or 13 of 1 in 73,500. Since I previously had a child with Trisomy 18, my risk goes up by 0.75% and slightly changes these odds, but they are still pretty great.

I'm getting an amnio anyway, since 1 in 73,000 isn't much comfort if you're the one, and well, I was the one. I have this nightmare that something will show up on an anatomy scan, something innocuous like a choroid plexus cyst, like Mac had, and I'll be terrified unless I know the chromosomes are perfect. Frankly, these days I wonder if a cyst like that is a sign of brilliance, or artistic ability since Mac is so smart and so amazing at drawing. Ehh, who knows?

So does anyone know if that PAPP-A level is low or high, or good or bad in terms of pregnancy outcomes? Or have access to charts or scientific articles with the tables attached? Links, please?

Even Wikipedia is blank on this one. Totally blank, useless, crazy making..... yes if any wikipedians are out there, feel free to fix that!!

I'm going to go eat some pickles now. Ta-ta.

13 comments:

  1. Sadly, I have nothing of interest to add to your analysis. I have been occupying myself with less realistic and scientifically based scenarios, because that's my weapon of choice. Looking forward to what your readers have to say though.

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  2. I can offer no help, but I wish you all the best. I'm rooting for you!!

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  3. Hi A,

    The way we came to suspect something was amiss in my T-18 pregnancy was directly from the PAPP-A number, not the scan portion of the NT screening. My baby's nuchal fold was right in the middle of the normal range and no other anatomical risk factors for genetic problems (lack of nasal bone or cysts in the brain) showed up. We left the scan thinking the baby was healthy. But the PAPP-A number from the blood test came back incredibly low for me, which is the sole reason why we ended up with a 1 in 5 risk for T18 or T13.

    I had been having almost no nausea and pregnancy symptoms compared to my first (healthy) go at baby making in that pregnancy, and given the complete lack of PAPP-A in my system, this made a lot of sense after the fact. Or at least so-sayeth the genetic counselor I saw in my next pregnancy ...

    I also know a woman who had a T.21 pregnancy with a NT measurement in normal range who had the problem caught because of abnornmal PAPP-A readings. I do not know if her levels were high or low compared to normal, though. Just that she was one of those unusual cases for Dow.ns where the scan alone didn't set off alarm bells.

    I think the thing to take away from the two cases I bring up is that while the scan alone would have left our baby's genetic problems undetected, the scan plus the blood work was MUCH more accurate in accessing real risk.

    Your combined numbers sound fantastic to me. Sending you healthy placenta vibes!

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  4. yay good genetics!!?
    I got nothing on the placenta front that I didn't learn from you in the first place.
    Though I will subscribe to that theory of the cysts being a sign of brilliance.
    I will call in my biochemist for you she easily rises to a challenge like this.

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  5. I have no idea... but I'll be following closely to see if anyone else does!

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  6. I think you know more about this then any of us, but higwire press and medline are search engines for scientific, perr reviewed papers. Most have free absrtacts and summeries and some are entirely free to read and print out. I you feel like it.

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  7. Add me to the list of people that would love to know the answers to your numbers but alas I am clueless. Can you call a specialist at a teaching university possibly? I did that once for a genetic question and they were wonderful....just a thought.

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  8. Hmm, I'd actually never heard of this. Is a heatlhy uterus a sign of good CHROMOSOMAL health, or all-around GENETIC health? Because, not to whig you out because my 1:billion baby who had "my god, we've never seen anything like this" had a healthy placenta, as far as anyone knows. But now *I'm* curious. (What about MY placenta, hmm?) But I'm also chuckling slightly because my Bella also had CPC around 18w causing me to freak the hell out and have amnio, and she's also a v. smart cookie. Maybe there is something there.

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  9. I was going to say that Dinky Pie's (physical) measurements look lovely, but I can't add much on the bloodwork front as that part of the screen wasn't offered (available?) when I had my son and was useless this time around with two.

    Having said that, I know that the bloodwork results are significantly less telling than the ultrasound and know at least one woman who let her bloodwork numbers freak her out and now has a perfect 5-week-old. Hopefully the doc has a positive interpretation for you so that you don't need to go through that stress too.

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  10. Sorry, I don’t have much to add

    "Frankly, these days I wonder if a cyst like that is a sign of brilliance, or artistic ability since Mac is so smart and so amazing at drawing"

    I hope you right... because they found a CPC on my 20 week scan... I am sick of worrying so much...
    Sometimes I wish I could be just another naive pregnant woman

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  11. MoM tells you how far you are from the median & the median is 1, so 0.66 is lower.

    I read this article - http://www3.interscience.wiley.com/cgi-bin/abstract/97519075/ABSTRACT - and based on its findings, you would have a very slightly elevated risk for complications in pregnancy.

    Please feel free to email me if you want me to send you the article itself.

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  12. I completely satisfied with the information and ideas you've shared. Very valuable among the readers including me. Thumbs Up for the job well done. Keep up the good work!

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