Lots of people travel over Thanksgiving - who knew we'd be heading to Suckville?
Turns out I was probably so wound up about not being pregnant last time I posted because of all the hormones caused by pregnancy. And then once I was pregnant I just could not bring myself to write about it - barely even to speak about it. At one point early on I convinced myself I'd had a miscarriage while we were out of town - called the Dr and came back in town a day early to get an ultrasound - everything was fine...except for a cyst on my left ovary that I have been thankful for everyday since. That little cyst bought us serial ultrasounds to make sure it wasn't cutting off blood flow to the ovary or getting too big to leave room for the baby.
Last Thursday, at the 12 week u/s, the tech thought the baby had an increased nuchal measurement (a marker for Down's). The next day the doctor called to say that the u/s had been reviewed by a maternal/fetal medicine specialist and there appeared to be a "more significant abnormality." Seems that the baby has a cystic hygroma. We set an appointment with the mat/fet med folks for Monday morning and my husband and I spent the weekend online earning a medical degree from Google University.
The mat/fet med u/s showed a cystic hygroma that measured 8mm – in a space that should have been about 1.5mm at this stage of pregnancy. The bigger the hygroma the lower the chances it will resolve - and ours was pretty big. Two other factors that appear to impact the chances of the hygroma resolving are it’s position (anterior is good, but ours is posterior) and whether the cyst is septate (divided into multiple compartments) and ours has at least three divisions, which is bad.
A cystic hygroma (CH) develops when the communication lines between the jugular sacs at the back of the neck and the jugular veins aren’t completely developed, so fluid can’t drain as it should. A baby can be born with a CH and live – this alone does not have to be deadly unless it advances to hydrops , which is 100% fatal. As we understand it, hydrops occurs when that sac/vein communication is cut off entirely. Usually the pregnancy terminates by the second trimester when hydrops is present. We can’t seem to get a clear picture of how to tell when hydrops has come calling, but we got the idea that scalp edema and possibly anasarca (general edema of the body?) are indicators of hydrops, and the baby had both of those conditions. Clearly, we knew at this point a side trip to Suckville might be added to our Thanksgiving agenda. But wait there’s more…
So during the mat/fet u/s I looked at the screen and said “What’s that?” and the tech said, “That’s the stomach.” I looked again for a moment and remarked, “It kinda looks like its outside the body,” and the tech replied “Uh, yeah.” We didn’t bother to ask what that could possibly mean because we know the tech isn’t allowed to say anything. So when the mat/fet med Dr came in to re-do the u/s (they always have it done twice at this place) he told us the baby had an omphalocele – a problem with the abdominal wall. When a baby is formed the abdomen closes in 4 sections – top, bottom, left and right. If one side doesn’t close correctly, the liver or a kidney or some intestines might form outside the body. If the bottom doesn’t close the bladder gets out, and if the problem is at the top of the abdomen the heart gets out. It was our lucky day (not), the heart appears to be fully or partially in the omphalocele. Thing is – a baby can be born and live with this too. Lots of surgeries, but a baby can live through this…of course the worst kind is the kind where the heart is involved.
Both the cystic hygroma and the omphalocele are probably caused by a chromosomal defect, and the mat/fet med Dr explained that chances of other severe problems (also caused by chromosomal screw-ups) involving the heart or kidneys are high, but that they can’t usually identify those until 20 weeks or so. It was right about then that it was obvious a trip to Suckville was now the only traveling we’d be doing this holiday.
Since this feels like the longest blog entry ever written, I will go ahead and post this first part, and follow-up with an entry about our options.
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