Wake Me Up When It’s All Over

Not posting this until we know more, so if you want to know the results of everything, skip to here.

Last Friday was our 20 week anatomy scan. I was nervous going in, because as I told Christopher, if they were going to tell us something was wrong, this was pretty much their last chance to do it. But mostly I was excited. I had started really feeling movement consistently, so I wanted to see if I could tell what movement corresponded to what thumps I was feeling. Plus, this time it would really look like a baby, not a blob or a baby-ish thing.

I was surprised by how uncomfortable it was. Baby is hanging out low, and head down, and they took a lot of measurements of the head, so they had to sort of dig in to my belly with the wand a lot. I don’t like any pressure at all on my belly right now, so I wasn’t liking it. I was also annoyed because they never slowed down in taking measurements, so we basically saw nothing recognizable. Helpful for avoiding finding out the sex, but I would have liked maybe a profile of the face or something, instead of a bunch of weird blobs and a nice shot of what looked like Predator.

Anyway, the tech did all the measurements, and then I expected her to ask if the student (we go to a teaching hospital) could try some, like last time. Instead, she said she had to go get the radiologist. I wasn’t really worried at that point, since I didn’t know if that was normal (apparently it’s not). The radiologist did some more, again focusing on the head. Then she said that they were seeing a problem. The baby’s ventricles in the brain (pockets that are full of fluid all the time) were enlarged. She said it could be a sign of Downs, or several other things, they couldn’t tell just from this ultrasound. They were going to send the information to my midwife (I had an appointment immediately after with them), but I was going to need another, more detailed ultrasound with the Maternal-Fetal Medicine (MFM) specialist.

We drove over to the midwife’s office, mostly in shock. I did google a bit, but my phone is pretty crappy so I couldn’t find much that way. The midwife didn’t really have any more to add. I did think to ask if there was any chance it was nothing, and she said no, not really. I’m assuming there’s always that .00000001% chance, but this is clearly going to be a problem of some sort. They also gave me a copy of the report from the ultrasound.

Basically, movement and heart are normal, as was my cervix (I was irrationally worried about preterm labor, so that was comforting), but the growth was off (large head, small to normal body and limbs), and the ventricles in the brain were enlarged, measuring 20mm. 10 is apparently the cut off for normal, and they’re typically even smaller than that. Cerebellum was also possibly hypoplastic (underdeveloped) (14mm), and “choroid is dangling.” Also “mild distension of the renal pelvis” (enlarged kidney area), though they seemed less concerned about that.

They took some blood for some screenings, and they’re getting me in with the MFM asap (next Friday, looks like, 2 weeks from the original ultrasound) for a more detailed ultrasound, and I’m supposed to meet with a genetics counselor. I googled some, which normally you’re not supposed to, but honestly I was thinking the worst so in this case it helped a little. Not showing any markers for trisomy 18 or 13 (very bad possibilities) based on google (obviously very reliable), downs is a possibility. I think the biggest concern, though they downplayed it, is that it’s caused by infection. That could likely be fatal (for him/her, not me). It’s also possible that it could all wind up coming to nothing, and the baby could be 100% normal/healthy, though that’s not at all likely, or at least there could wind up being just minor developmental delays later. Or s/he could have severe developmental delays and pretty much never be “normal.”

We’re still very much in shock, and trying to process what we can even though we don’t know anything yet. We’re just in a stasis mode, not knowing if this baby will even make it, so it’s hard to want to move forward with anything like nursery planning, but trying to stay at least somewhat hopeful. At first I was thinking “how could we have such bad luck again?!” But then I realized that probably wasn’t the way to look at it. Two unexplained miscarriages and now a non-healthy baby is a bit of a coincidence. There’s a good chance it’s all related, and one or both of us is carrying some markers for some sort of genetic disorder. I talked a bit to one of the ladies on my due date board on Hellobee who had gone through just that. They found after her second miscarriage that she carried a marker, and was told her odds weren’t good of having a healthy baby. They wound up going the IVF (in-vitro fertilization) route, because the embryos could be tested before implantation to be sure they got a healthy one that wouldn’t miscarry. After talking to her, I feel like if we wind up in that situation, at least I know sort of what to expect and it’s not hopeless (though very expensive, insurance covers zero of IVF costs, which are substantial). There are also ladies on HB that have had children born with brain damage, or faced high risk pregnancies, or other things, so I have people to talk to if we wind up dealing with any of that. I’ve also read a book in the past about preemies, and some of the brain damage risks from being premature look at least similar to what we could be facing, so that doesn’t seem entirely unknown to me.

It seems like a few things could happen at the next ultrasound. They could say the ventricles have gotten even larger, which pretty much eliminates any real hope. The baby’s brain can’t develop if all the space in the skull is full of fluid. Or they could have stayed the same or shrunk, both of which just sort of leave us with a lot of unknowns. I expect the genetics counselor to test us, as well as suggesting an amnio to test the baby, and see if there are any genetic issues (including possibly Downs). The genetics testing could let us know if there’s no chance of survival. If the ventricles haven’t gotten worse (and the rest of the brain looks mostly normal), and the genetic testing doesn’t show anything, it will probably just be wait and see. I guess that’s sort of the best case scenario, even though the waiting would not be fun. It’s definitely frustrating that all we can really hope for is no real answer at all, since most of the definite answers are bad.

After my first miscarriage, the doctor kept telling me it wasn’t my fault, over and over to the point that it was irritating. I wasn’t blaming myself, so please shut up already. Now I understand a little better. I’m not blaming myself, but I keep wondering if there’s something I could have done differently (not likely). I haven’t been sick, so how could it be an infection? Toxoplasmosis is a possibility, which you get from cat poop, but I haven’t cleaned the litter box since we started trying to get pregnant the first time. Maybe one of the dogs got in the litter box and tracked it to me? I do regret skipping the nuchal scan at 12 weeks, because it could have at least allowed us to find this sooner. Then again, it could have developed sometime since then, so maybe not. Would it have been worse to have gotten through that one thinking everything was good, only to have been blindsided by the bad results this time? I do think genetic testing for us after the second miscarriage would have made sense, and I’m not super thrilled that the other MFM that I saw at that time didn’t suggest it. But insurance probably wouldn’t have covered it, so I don’t know if we’d have done it even if they did suggest it. There’s really no point in looking at the “what if’s” at this point. Maybe I’ll reconsider what I would have done differently, so if anyone asks for my advice I can give it, but not now, when we don’t even know what ‘s causing all this.

Also, one last thing. Assuming we get an amnio done (which I really think we will unless it’s just straight up not going to make it), I think we’ll find out the gender then. I know I just wrote a whole post about why we don’t want to, but at this point there are other considerations that seem more important. Namely, the fact that I really need something to help me reconnect with this baby. With the prospect of possible loss on the horizon, I just totally disconnected. For the first couple days after we got the news, I was startled whenever I felt movement, because I’d half-forgotten I was still even pregnant, and that we hadn’t lost it yet. I’m much better about it now, and back to at least tentatively thinking about the future with a baby in it, but I still need all the help I can get. Being able to picture a little girl or boy, instead of a vague “baby” would help.

I’m not sure how to wrap this up. Like I said, not posting this till we have some answers of some sort, so just move on to the next post to find out.



One thought on “Wake Me Up When It’s All Over

  1. Pingback: Longest. Day. Ever. | On the Road to Crunchy Mama

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