Saturday, October 13, 2012

Choroid Plexus Cysts: A post I plumb forgot to write

About a year ago, when I was 20 weeks pregnant, I wrote:

The 20 week scan, which confirmed that Chip is healthy and all major organs are present and correct and doing what they should. There was an "incidental finding" which, combined with googling and deciding I could read ultrasounds real good, sent me into a complete tailspin over the weekend, but I am now happy to rely on the medical profession who are unanimous that there is nothing to worry about. 

I always meant to come back to that "incidental finding" later in the pregnancy, or once Chip was born healthy, perfect and in one piece (Apgars of 9 and 10, y'all, you can only get a little more perfect than that), but apart from a false start somewhere along the way, I forgot.

Until yesterday, when I read my buddy Brittney's report of her 19-week scan, and I was transported back in time to the ultrasound room at Angelsea Imaging...

"See here, and here?  These are cysts on the brain... they're sort of pockets of water.  Back before we had the blood tests for Downs they were kind of a big deal, but not anymore....but I have to note them, so they'll show on the report."

At the time, all I heard was "no big deal" and something  that sounded to me like "coroplexis".  We had a healthy baby boy baking away in there, all four chambers of the heart were fine, the blood was moving properly, we had avoided all of the scary things I knew could come up at the 20 week scan (an aquaintance lost her baby after discovered it had anecephaly, another had discovered a missing kidney and a bowel problem requiring major surgery, and so on and so on), and there were cupcakes for sale next door. 

But of course, I am ME, so I went back to the office and started googling.  I soon realised that what we'd seen were "choroid plexus cysts", three words that plagued me for the next 18 weeks and 6 days.  Basically, choroid plexus cysts are nothing to worry about at all, in and of themselves, but (along with a massive number of other things), they can be a "soft marker" of chromosomal disorders; really, one chromosomal disorder, one of the nasty "incompatible with life" ones, trisomy 18.  One article suggested that the finding of a CPC increased my chances of having a baby with Edwards Syndrome eightfold.  If CPCs are combined with other "soft markers", the risk of having a trisomy baby rises exponentially. 

I'd had good blood test results, so my initial risk of having a baby with T-18 was about one in a gazillion (lots of thousands, anyway).  The CPCs took it to one in many hundreds, or fewer thousands; one of those anyway.  I can't remember the detail, and going back into my emails at the time is just soul-destroying.  There were no other soft markers mentioned during my scan, and we'd seen the baby's hands waving (clenched fists is a hallmark sign of T-18).

So, you'd think I'd be OK, right? Wrong.  At first I was just a bit sad, but that night, I decided to google some MORE (slow learner here...), and to have a look at the DVD we got from the scan "for reassurance'.  Reassurance- HA!  This Expert on Ultrasounds here managed to convince herself that the baby had a short femur, a too large head circumference, a munted umbilical cord, and a few other soft markers too.  I also managed to invent some kind of potential problem with my bloods- I can't even remember what it was now! In the space of an hour on google, my baby had gone from a baby with a one in a many many hundreds chance of having an abnormality to a baby who was almost certainly going to DIE.  I knew I was being silly, but I spent the best part of that weekend crying, reading T-18 blogs and preparing for the worst. I read lots of reassuring forum threads, but it still didn't seem like it was something "common", it still felt like it was just me.

I never really got over it, but it got a lot easier.  My midwife told me she pretty much always had a lady whose baby had CPCs (she laughed- good naturedly- when I told her about my googling... somehow she'd predicted that one).  I didn't come across anyone else with CPCs for a little while, but I did learn that a few bloggers I followed had had other soft markers come up during their anatomy scans, and their babies all came out just fine.  Then Lisa had her scan, and found out that the baby who was to become the gorgeous Miss Charlotte had bilateral CPCs like Chip.  And I learned from that that Heather's KB also had them- I hadn't even noticed in Heather's original post, which I'd read a few weeks earlier.  I still worried that my baby would be the exception, but I stopped bawling and planning for the worst, and started worrying about different bad things instead. And then eventually Chip was born, and after a few months of constant worry about SIDS, I'm not worrying so much about random scary catastrophes, and instead worrying about the basic stuff, keeping him fed, slept, healthy and happy.

So why write about this now?  So the next time someone googles Choroid Plexus Cysts, there's just one more good news story coming out in the search results (even if they have to scroll forwards a few hundred pages to get here!)

1 comment:

Angela Noelle said...

I've heard a similar story to this so many times--it almost makes me wish they didn't even look for these "soft markers". I know so many girls who have spent their pregnancies absolutely terrified and everything turned out 100% okay. Medical advances are amazing, but when the science is still this wishy washy, I think I'd just rather not know :/