Those four days of waiting were, you know, awful. My mother and grandmother wanted to stay, but I sent them home. I didn't want to have to be polite, or make small talk, or hold up under sorrowful looks. I spent the time learning all about the various conditions we seemed to be facing. The more I learned, the grimmer things seemed. Hydrocephaly, fluid in the brain, could be a relatively minor and completely manageable condition at one end of the spectrum, or it could be completely devastating and lethal, on the other. Same thing with omphalocele, defects in the abdominal wall. And the heart issue, again, depended on how bad. If the sonogram lady was right, then it was dire. If not...well, I couldn't see anyway it wasn't going to be the worst, especially given that there were multiple problems.
I spent a lot of time crying, and so did Orion, though I think he was trying to be strong for me. He relied on me to get all the information, and I relied on him to call up family and tell them what was going on. It became clear to us that if things were as bad as they seemed, then we were going to terminate the pregnancy. We were in complete agreement and resolved. We both felt that the harder decision would have to be made if things were bad, but not dire. Would we be willing to try and have a baby that would have severe developmental problems, need multiple surgeries, have a very shortened life expectancy, and couldn't leave the hospital? If so, what does that mean for our lives? If not, does that make us bad people? Unfit to be parents? If we weren't willing to take that on, then maybe we shouldn't be trying to have a baby in the first place. I really felt like I journeyed into the heart of darkness during those four days.
The time for our appointment finally came, and we made our way into Kansas City to one of the large hospitals there. On the plus side, this experience was the complete opposite, in terms of doctor/patient relations, than our previous experiences had been. First we met with the genetic counselor, who also seemed to be acting as our case manager, or something like that. She went over the records that we brought with us, and was aghast at our description of how everything went down. I made it clear that we wanted to know everything as they knew it. We didn't want to be treated like idiots or infants. She agreed completely and proceeded to tell us that things didn't look good, based on the first sonogram results. Shockingly (not!), she didn't see anything inconclusive about the results. She said that given the apparent suite of problems, we were probably facing a chromosomal abnormality. Probably a trisomy of some sort. I nodded. This made sense. I had said as much to Orion a couple of days earlier. Throughout this meeting, I was awash in this weird mix of gratitude for being treated like an adult, relief that we were finally getting some solid answers, and crushing grief over the news we were hearing.
She took a complete genetic medical history from both of us, looking for possibilities. Nothing came up. Then she brought out these chromosomal flash cards and asked if she should go over the basics. I shook my head, but Orion said, "Yes." I felt so stupid at that moment. It never occurred to me that Orion didn't really know what a trisomy meant. I taught Intro Biology labs, complete with an entire section on mitosis and meiosis. I'd just assumed that of course Orion knew how it all worked. I don't know why I reacted so strongly, but I felt ashamed that I hadn't taught him myself, that he had to learn it from the nice case manager lady. Anyway, she walked him through it with her karyotype flash cards, and then we went in for the actual sonogram.
It was a much more elaborate set up than at our OBs office, of course. There was a big monitor set up over the bed so we could watch everything the whole time. The case manager lady introduced us to the sonogram tech, and told her that we wanted to know everything. She said, "Good." and went to work. She took us on a tour of our little, malformed fetus. She showed us the two (or three?) omphalocele and explained that they were severe. She showed us the heart, beating away, but with only two real chambers, and a kind of blob where the atria should be. Then she showed us the skull, with two enormous fluid filled sacs where the cerebral lobes should have been. She was kind, but direct, and ignored the fact that I was crying the entire time.
She stepped out to get the perinatologist. He came in and was also kind and direct. He essentially went over exactly what we'd just heard. He explained that there was very little brain development beyond the brain stem, but that was all it took for the heart to beat and for movement to appear normal. I said that all of this seemed dire, and he said that I understood correctly. He said that floating in amniotic fluid was an easy environment to survive in, but that if we had this baby, it would die within hours of birth, if even that long. He apologized for bringing it up, but said that he understood from our interview with the case manager that we were considering terminating the pregnancy. He said he didn't want to offend us. I guess in Kansas a doctor has to apologize for even discussing all the options. Feh. I told him there was no need to apologize, and yes, that was our intention given the prognosis. He nodded and said that he thought it was the right decision.
He also said he thought they should do an amniocentesis so that they could test for genetic anomalies. My initial response was a flat, "No." I was exhausted and I was done with it. I didn't want anymore procedures, or poking, or anything. I was now facing an abortion, and that scared the shit out of me. I just wanted to go home. He said he understood, and it wasn't absolutely necessary, but it would be fast, painless, and easy since I was already here, and it could give us a better idea of what went wrong. I was sobbing by this point. He said he'd give us as much time as we needed to talk it over and left us alone.
After talking around and around, I finally decided to do it. It would always bother me, not knowing. Also, there was a slight chance that I had some sort of chromosomal abnormality that would cause this same thing to happen with any subsequent pregnancies, and that's something I'd want to know about. He came back in and did it. It wasn't, of course, easy or painless, or even fast. Though he's apparently a whiz at it, according to the nurse assisting, anything medical with me doesn't happen easily. He had to poke around and it took about 10 times longer than usual, according to him. Anyway, he finished and we left. We had a follow-up appointment with the horrid OB the next day. Why we kept that appointment, I'll never know.
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