Update on the choroid plexus cyst issue

Thanks for your comments on my last post. You have been really helpful and encouraging and I appreciate it more than you know.

In the way of an update, I asked my OBG to call me back and she did pretty promptly. I asked her why she wouldn't recommend another ultrasound and she said because the risk seems so low and it would be crazy to send everyone that has a CPC over to a peri-natologist. "Crazy because it would just be the same scan?" I asked, "or crazy because it would be too expensive?" "It's just not indicated," was the answer. This seems like an odds-based conclusion. Why send 300 women over there if only one really should have gone. Let's spare the 299 women (and u/s techs) at the 1 woman's expense, kind-of-thing.

I asked if my first trimester screening results could have been changed much by the second tri quad marker screen. She said probably not, the second screen would only catch about 2% more of t18 babies and she's never seen anyone's odds jump from 1/100,000 to 1/300 in one test, though she made sure to say that she couldn't say it would be impossible (legalese no doubt).

I asked if my anatomy scan tech had looked for markers of t18 and she got all uppity about my use of the word 'markers' - she thought clearly I had been doing research since yesterday afternoon and she mentioned it. I ignored that. She insisted that everything else they looked at in the anatomy was normal and that I could see my results online. That hadn't occurred to me and it was a relief to know. She clearly didn't want to use the words 'marker' but when I asked if it was true that other t18 signs may have shown up on my anatomy scan if the baby had t18, but didn't in this case, she said yes, that was a true statement. I have since read anecdotal stories about people finding things like heart defects and club feet in their initial anatomy scan so it does give me some comfort that everything else was normal.

The online results were as follows (with some emphasis added):


Single live intrauterine pregnancy is present with fetus in cephalic presentation. The placenta is located anterior without evidence of previa. Amniotic fluid is within normal limits.

Survey of fetal anatomy demonstrates normal posterior fossa structures, spine, 4 chambered heart, stomach, kidneys, bladder, cord insertion site, 3 vessel cord and bilateral upper and lower extremities. The fetal heart rate is 160 beats per minute. Of note, a 3.5 mm left choroid plexus cyst is present.

Following biometric measurements were obtained: BPD 4.6 cm, HC

17.2 cm, AC 13.7 cm, FL 3.0 cm. [no idea what these mean]



Estimated gestational age by ultrasound is 19 weeks 2 days +/-
10 days with estimated date of delivery August 18, 2010 [this is two days ahead]. Size equals to dates.

No abnormality is noted in bilateral maternal adnexa.

Impression:

1. Single live intrauterine pregnancy with gestational age 19

weeks 2 days. Size equals to dates.

2. 3.5 on the left cord plexus cyst. The clinical significance of

choroid plexus cyst is indeterminant. Further evaluation with

genetic counseling and/or Level 2 ultrasound should be based on

clinical assessment.




That last line was confusing, about the further eval or u/s being based on clinical assessment. I guess my OBGs assessment was that such further actions were unnecessary. HOWEVER, she did tell me, after I asked all my questions (so she probably felt pressed at this point to punt any further questions), that I could talk to the peri-natologists and get another u/s if I wanted. But she also mentioned (and my googling has confirmed) that they may find other things. She said it in the sense that "if they find other markers they can really give you a more accurate risk assessment." But what echos in my head is that they might find more problems.

Right now I have an isolated CPC as far as anyone knows. And no one is telling me to get more tests. I even was fortunate enough to get a quick second opinion. V's dad is a seasoned OBG and he said he's seen at least 500 of these cysts in his career and none has ever manifested in a t18 baby. He would only be alarmed if it was unusually large. 3.5mm is not large. In fact I saw one reference to one study saying that 5mm or less may not be correlated with t18. I haven't read the study though and am having trouble finding it. Everything else I've read says size doesn't matter...unless it's really big.

My research has taught me that it's possible for a CPC to be the only sign in a baby that has t18, but that it is extremely rare (and probably rarer if you haven't totally hidden your head in the sand, which I haven't completely. I did have the NT scan and first tri bloodwork and I imagine the diagnostic center where I had my anatomy scan is fairly sophisticated. They did pick out the CPC in the first place, after all. Sometimes the very existance of a CPC is unclear in the initial scan.)
V, who has been really attentive and supportive since I told her, said her dad acted like it was no big deal and that if it was her, she would just let it go at this point. And she didn't say it with an ounce of insensitivity or condescension. It was supposed to be encouraging, and it was.

So now I am contemplating living with what I know now and not getting the second scan. Because I don't think I could cope if they found just one more anomaly, like a femur that's too short by 1mm or a head circumference that's in the 25th percentile. Even though these things probably wouldn't be a cause for concern either. I can barely function as it is. I haven't eaten much in the last 24 hours, I feel panicky and depressed, and at this point it's supposedly no big deal. No one is suggesting that it's a cause for concern. No one is suggesting I do anything. Imagine if I was told something else was "off" a little bit. Maybe paired with a new risk profile I'd be ok, but is it worth the risk of spending the rest of the pregnancy in a state of despair? What if the results have me contemplating an amnio - you think I'm a mess now... The stress I'm inflicting on this poor baby is probably far worse than anything in its constitution. It's probably just fine.

I think I'm going to work on forgetting for a little while. I made it to work today. Maybe tomorrow I'll actually do some work. Maybe I won't be so cheerful about this pregnancy and maybe I will be more cautious with my emotions. It will take a monumental psychological adjustment on my part to get over this, because it's me we're talking about. I'm sure plenty of people shrug it off, trust their doctor, and don't think of it again. But this is going to take work for me. I think I need the practice though, practice in letting go.