Backstory 1: The Beginning of the Bad

When DH and I decided to try to start a family, we both worried. I grew up hearing about my mother's multiple miscarriages and her heartbreaking stillbirth, so unlike many who naively jump into trying to conceive who figure that they'll be hatching a cute little baby bump in no time, I didn't think the sperm and egg would automatically get together post-haste.

So, when got knocked up the very first month we tried, I was happily shocked, but still nervous that my mother's infertility history was something she'd passed along. The first trimester every time I went to the bathroom, I was sure that I'd find blood in my underwear. But despite a terrible morning sickness that lasted for 20 weeks and then terrible leg swelling that lasted the rest of the pregnancy, things kept chugging along. Ten days past her due date Big A made her entrance into the world. While it wasn't a "textbook" perfect delivery, I had pushed her out by myself, and she was ok in the end, so despite the liberal oozing of both Big A's and my bodily fluids, I was pretty enthusiastic about the birthing process. I remember telling a delivery nurse "Oh, that was ... FUN!" after it was all over and she was cleaning me up. Labor had hurt like hell, but it was also so amazing and interesting that the only word I could come up with to describe it was "fun." While poor DH was fairly shell shocked and told me that he would understand if I never wanted to go through that again, I was certain that I wanted to have another baby at some point, even just hours after grunting through the marathon of contractions.


When we decided to try to get pregnant a second time, the whole issue of whether sperm and egg could get together wasn't something we dwelled on. In fact, DH and I were pretty blase about everything to do with the second pregnancy: we told people we were expecting before I was showing, and made lots of plans for the impending birth well before I was out of the first trimester.


I only had one nagging, quiet worry in the next pregnancy. There was no morning sickness. How could that be, I sometimes wondered. How could I be so sick for so long with Big A, but not have any illness to speak of the second time around? But it was easy to laugh off the worry, or ignore it. At least until my nuchal translucency and maternal serum screening test came back positive for Trisomy 18. We got the results when I was past the window for a CVS test, so we had to wait until I was further into the second trimester to get an amniocentesis to confirm or deny the findings of the screening test.


People throw around words like agony and torture cavalierly. But the agony DH and I felt during the three weeks between screening positive for T18 and confirming that diagnosis via amnio were agonizing and tortuous is an old school, biblical sort of way. The first time I read about Trisomy 18 online I nearly vomited and had to lie down for awhile. The phrase not compatible with life seared my brain. The description of the defects associated with the disorder were overwhelmingly serious and numerous. I had never felt so bleak.


Our friends and family did not grasp the depths of DH's and my desperation at first. They meant well. Really. But, they didn't understand that advising us to "just not think about it" until we had the amnio results was impossible. They thought sharing stories of neighbors and cousins and coworkers who'd gone through similar worrisome scenarios that had turned out just fine would give us hope, rather than alienate us. Every pregnancy has a scare, they'd say. Everyone made it really clear that they would be there to cheer for us when we got good news.


Nobody, not even my OB, brought up what the options would be for the pregnancy if it didn't turn out to be good news. No one at all felt we needed to talk about that right now.


In the center of that cloud of positivity and good intentions DH and I sat alone, frightened, bewildered. We had to figure out what to do next. We had to consider all the options, not just the good ones. Because whenever I had the courage to sit quietly with my thoughts about our situation, my instincts blew through me like an icy draft. I was fairly certain my baby was not ok.

Three days before Christmas the genetic counselor called us with the amnio results. She was jittery and stammered when announcing the news. I told her I wasn't surprised.

Everyone else was extremely shocked and horrified at the idea that the baby had a terminal disease. Nobody really knew what to say. Me, I had precooked Christmas dinner and wrapped all the gifts for Big A early, knowing that in all likelihood, her parents were not going to be up for last-minute shopping or party planning once they found out their baby was going to die.