Before beginning what will likely be the longest blog entry since I started writing in 2002 (a decade of blogging makes me feel hopelessly old), I have to say how truly grateful I am for the support and love from all corners of the internet. While I have of course been shown the true depths of empathy that exist in my friends, family, and coworkers (really, I can probably never convey how much that has meant to me), it strikes me how many messages of support I’ve gotten from people that I have never even met. Sure, we follow each others comings and goings via feed readers and social media, but realizing that there are people in the world that– really, no-foolin’– are ready to hold you up through the Actual Worst Thing That’s Ever Happened to You…is pretty wonderful. Thanks, you guys. Thank you so, so much.
So, the beginning. The “beginning” of this whole process was our anatomy scan, which was done when I was exactly 19 weeks along. GP and I headed to the practice recommended by my usual OB, a practice with a high-resolution ultrasound machine that would show us how our baby’s organs were developing, and that would allow us (provided the baby was cooperative!) to find out its sex. We were excited to see the baby again, as the prior two ultrasounds had been nothing short of thrilling. Heck, even hearing the baby’s heartbeat on the Doppler at routine doctor visits was amazing. We waited for a little while, catching a few minutes of Live With Kelly and Michael (“Michael Strahan is so charming!” exclaimed GP), then making our way back to the room where we’d get to see our baby again.
The first thing we found out was that it was a boy– we were enthused about finally finding out the sex, but not necessarily more or less excited to hear “boy” rather than “girl.” I felt validated because I had had a dream that the baby was a boy (you know, a totally reliable way to predict your baby’s sex), whereas GP had had a dream in which the baby was…a kitten. (So I sort of knew that I had a greater chance of being right, anyway.) The tech went through the rest of his measurements, noting that the spine, kidneys, etc looked fine. There was an issue in the way that the baby was positioned– such that the tech couldn’t get a good look at the heart or brain– so a doctor was sent in. That’s where things started to go downhill. After GP and I had discussed the implications of our baby being a boy (“He is not allowed to play football!” “He can take dance classes if he wants to.”), we fell silent as the doctor spent what felt like an eternity looking at the heart; we could see it beating on the large screen in a corner of the room.
“What I’m seeing,” said the doctor, “is that the heart isn’t divided into four chambers as it should be. I’m also seeing some cysts in the brain, and I’m concerned about the position of the fingers.” She went on to explain that the heart defect she saw (atrio-ventricular septal defect) was perfectly operable (and people who have this corrective surgery as babies live long, healthy lives), but that it, along with the brain cysts and finger positioning, could be a marker for genetic anomalies like Down syndrome and others. After answering our questions, she left us in the darkened room to absorb this news about our son.
It was just under a week between our first and second appointments. During this time, I had my second trimester blood screen done and learned that I had a whole slew of newly high-risk results, after a completely clear first trimester screen: there was a 1 in 110 chance of trisomy 18 (three copies of the chromosome rather than the usual two), a 1 in 88 chance of Smith-Lemli-Opitz syndrome (something that my regular OB, in sharing the results with me, confessed that she had never seen), and a 1 in 70 chance of Down syndrome. Given these odds, we were thrown into a flurry of research. What would it mean if our son had one or more of these genetic problems? What choices would we be able to make about my pregnancy, and what impacts would they have on all three of our lives?
We spoke to a genetic counselor at our second visit and discussed what the presence of genetic anomalies would mean, mentally and physically, for our baby. We also had another ultrasound, where we learned that the previously-seen AVSD wasn’t actually there (a small relief, sure), but the brain cysts and hand deformities were still present. I knew, after receiving the blood results earlier in the week, that I wanted to do an amnio in order to have definitive information about our son. Rather than having to wait for another appointment, we were able to do it right there, with a promise that we’d have preliminary results within a few days. As we wrapped up the appointment, the doctor asked us if we’d thought about what we’d do if the results for any of the genetic defects came back positive. Because we had talked about it, discussed and agonized over our potential decisions, I responded that we would likely choose to end the pregnancy rather than attempting to go full term and cope with what would likely be very severe mental and physical handicaps.
That weekend, we went to the wedding of a couple close friends– the groom had been one of GP’s best men, and GP was returning the favor. As I sat in the church with my in-laws (also in town for the wedding), watching our friends get married, I thought about the lives that GP and I had created for ourselves, the small, happy universe of our marriage. We accepted congratulations from friends on our expanding family, keeping inside our growing fears that everything was crashing down around us. I never thought I would be so dependent on what seemed like a word problem from the world’s worst math class– I wanted to be one of the 109, one of the 87, one of the 69 women whose baby is prefectly genetically fine. I wanted to be sure that our son’s life would be long, happy, and healthy…and I knew that the odds were slim on all of those.
I got the call on a Monday, at about 10:30 in the morning. I jumped when the phone rang, raced to the atrium in my office’s building, and seated myself on the edge of a planter as a genetic counselor told me that my son had trisomy 18. Having researched all the possible results of the amnio, I knew what this meant. (Go ahead, Google it. I’ll wait.) I had an appointment with my regular OB the following day, and went ahead and made another at the practice where we’d had the amnio– we’d be able to speak with a genetic counselor again, as well as a doctor to discuss our options. I don’t know how I managed to breathe as I told my boss that I needed to leave, now. I don’t know how I made the drive over the hill from work back home. I don’t know how I managed to hold my body together as I walked into the house and made my way to GP. I didn’t– and still don’t– know how we got where we are now.
The counselors and doctors were supportive as we agonized over the decision to end my pregnancy, a decision that was the last one GP and I were able to make as parents of our first son. Having as much information as we could gather about our trisomy 18 diagnosis, we felt as though the decision was one we made to protect our son from a short life full of pain and medical intervention, despite the fact that it was one that completely broke our hearts. Not wanting to have my first experience with labor to be one that did not end in carrying a healthy baby out of the hospital, I chose to have a D&E, which was a two day process. Early in the morning of the second day, GP and I headed to the hospital, where I would be put under a general anesthesia and have our baby boy taken from my body. It would be at once redundant and hopelessly inadequate to say that this day, and the weeks that preceded it, were the hardest of our lives.
I know I’ll write more about this whole process, the moments and months that add up to a life-changing loss. Both because I know I can count on the support of family, friends, and strangers and because I want to add my story, my voice, to the legion of women whose pregnancies have ended, either by agonizing choice or chance, I will write more about this. Because writing about things is so often my way of working through things, of coping with them, and in this more than just about anything in my life at the moment, I need a place to work this out.