Faces of Loss, Faces of Hope

Deb

Mom to Angel Baby T.

October 7th, 2010

San Francisco, California

In early 2010, my husband Michael and I were still on the fence about whether we wanted a second child or not. Our daughter Coral is a source of joy, but she’s also an energetic, opinionated handful. Could we deal with a second child and our time-consuming jobs? That summer, something just clicked and we decided that just as with our first pregnancy, we wouldn’t actively try, but would welcome a second pregnancy if it happened. In my head, I was thinking that December would be a nice time to try. That would give me six months to get things in order before embarking on this new journey.

Due to incorrect math on my part and apparent fertility, we found out in July that I was expecting. I was stunned, but I figured it was just Life throwing me a curveball, and I rolled with it.

Everything was progressing just as it had the first time. At 12-14 weeks, it was time for genetic screening. I like to be prepared, so we went ahead with the screening just as we had before. With the first pregnancy, our genetic test results came back fantastic! Stellar! Risk levels well below our age group for all conditions! I thought that good genetics would give us a leg up this time around as well, so at 11 weeks–right at the end of the first trimester–we called our parents and shared the good news. It trickled into Facebook so the next week I thought “what the heck” and announced the pregnancy electronically as well. I even told everyone at work, since I was (paranoidly so, it turns out) absolutely sure I was showing already as it was my second, and thought everyone must be talking already. Sure, by some counting methods we were still in the first trimester, but other counting methods said it was already the second trimester and we should be fairly safe by now, right? I’ve had plenty of friends who shared their news at that point and were fine. I was to be taught a very harsh lesson. What a difference two weeks can make. Curveball number two.

On September 22, I went in for a standard genetic counseling session. It consisted of an ultrasound and blood report. I went in thinking I’d get some great photos to post online. During the ultrasound I marvelled at how–just as with my first–there was a tiny but unmistakable baby in me with ten fingers and ten toes, and how this little proto-person would be my real, live child, just like our beloved daughter. But one of the bloodwork indicators (PAPP-A) was very low and, shockingly for me, yielded a one in ten chance of Down Syndrome. That was the last thing I was expecting! The results kicked off a month of anxiety and despair.

We were offered the chance to do a chorionic villi sampling or CVS, which is a diagnostic test where a sample of placental tissue is extracted and the cells are examined. It is definitive, but carries a small risk of miscarriage. This test can be done within the first trimester. Because I was at the end of the first trimester, we had only ONE day to decide if I should go ahead with the test and risk a miscarriage. It was stressful making a decision, but after consulting with my mom and some friends, we decided to do it.

The CVS itself wasn’t so bad, though I stubbornly went alone. My husband is a teacher so he can’t just ditch work without preparing for a sub and once he misses a day, it’s hard to get back on track. After doing some research, I thought it wouldn’t be necessary. I even turned down a friend’s offer to come with me as it seemed too complicated. In retrospect, it was foolish to go alone–in case something had gone wrong–and while I was distracted by the procedure itself, it was emotionally trying afterwards; I knew that test would determine the fate of my child.

Then there were 10 gut-wrenching, excruciating days of waiting. I cried a lot, fearing the worst, and I was doing it mostly on my own since I felt I had overshared the news of the pregnancy so I didn’t want to overshare the news of these test results, too. While I tried to stay positive, there was something inside me that told me there must be something wrong. I trust science, and there must have been a reason the PAPP-A was that low. It wouldn’t have happened on its own if everything was normal. My head tried to keep it together, though my heart was already saying goodbye.

We found out on Monday, October 4 that the baby in fact did not have Down Syndrome, but rather, full trisomy 18. All the cells they looked at were affected. Trisomy 18 means three copies of the genetic material instead of two on the 18th chromosome, and it’s a random occurrence. This causes a range of awful problems and most babies with it die in utero, are stillborn, or if they survive birth, die within hours or days. A yet smaller percentage live longer but usually die within a year, and as I understand it, only a handful of survivors live to adulthood, though they usually have partial trisomy 18, not the full form my baby had. Basically, the numbers were stacked against the baby. The counselor called it “incompatible with life.”

We couldn’t bear to attempt to carry the baby to term only to die, or to live a life with such extreme difficulties, so we did what we thought was best in the long run for the baby and for us. A small part of me wanted to carry the baby as far as possible and hold him or her in my arms to properly say goodbye when he or she died. But after reading so many stories online about people who had made that choice, I didn’t think I’d have the strength to go through with it. I wouldn’t gain any comfort thinking, “my baby is with God now” because I’m not religious and I don’t know if I believe that. I wish I did. The trauma might have been easier to bear. All I could think about was the pain and suffering my baby might feel if he couldn’t breathe or her heart stopped beating. The suffering would be worse the longer I waited, because all that while, the baby would be developing its nervous system. Furthermore, since I had a c-section and labor complications with Coral, I was worried about being induced if the baby died in utero and/or stressing my body during labor only for the baby to be stillborn or die soon thereafter.

So…we opted to terminate. It was the hardest, saddest, most terrible thing I’ve ever had to do. I don’t want to mask what happened or mince words: I had to kill my unborn child because I loved it so much. This baby, whom I swear I felt move, even at only 14 weeks; whose heartbeat I’d heard several times; whom I saw living on the ultrasound; who was a real, little person; who was going to make our family of three a family of four… my baby! My baby! It meant extinguishing the hopes and dreams for this child, which I had already put on hold for two weeks while we waited for results–the planning of names and how to rearrange the rooms, whether to get a new crib or move Coral into a toddler bed, unwrapping the pregnancy workout DVDs, what “big sister” books to get for Coral, telling Coral she would be a big sister, imagining them play together, breaking out the maternity clothes since I was too fat for my already-big “normal” clothes, talking at all about the pregnancy, looking forward to being the fourth in my mom’s group to be pregnant again–all that ground to an unannounced and paralyzing halt.

I was in a daze of sadness Tuesday morning and scheduled the necessary appointments, then went in to work in the afternoon, which was surreal. Then Wednesday, I went to the doctor’s for the preparation appointment and the day after that was the termination. Michael and I said our tearful goodbyes to the baby together before barely sleeping on Wednesday night. (Actually, I had barely slept for several days at that point.) I can’t possibly convey how heartbreaking it was to be prepared overnight for an abortion the next day. It was surreal. Everything was surreal.

Michael came with me on Thursday morning, October 7, at 14 weeks and 2 days. The waiting was just so sad mixed with the weird, impersonal detachment of the doctor’s office. The valium and narcotic they gave me helped dull my senses but still be awake and present. I wanted to be conscious. The right thing is different for different women, but I didn’t want to go under pregnant and wake up without child. I wanted to be with my child for every second I could grab, up to the very last moment, as hard as it would be. When this awful thing was going to happen to him or her based in part on my decision, I couldn’t look away, even with my heavy, guilty heart.

The whole procedure lasted maybe 10 minutes and was only a bit uncomfortable. The doctor was quirky and strange which in a way helped take our minds off things, or at least, make the actual act less emotionally intense. We cried as soon as she left, though, for a good 10 minutes. I pulled myself together, and started feeling nauseated a bit on the way home. The drug made me woozy and I slept for hours after I got home. There was more crying after I came to, and really on and off for the day or two after that. The grief was wild and raw. I did go in to the office the next day for half a day to take my mind off things, and then spent the evening chatting with a friend, which helped a lot.

I started taking walks along the beach again after dropping off Coral at daycare and, as I surveyed the breadth of the ocean and the sky, I wondered where my baby had gone and if he or she was looking down at me. I would look at this small window of the vastness of life and realize I had joined the “death” club. I would lie in bed at night, staring through watery eyes at the dark ceiling, and beg forgiveness from the baby whose life I had chosen to end. Not because I thought we did the wrong thing, but because what we felt we needed to do was so dreadful. “I’m sorry,” I silently intoned. “I’m so, so sorry.”

After the first weekend, I thought the shock started to go away and I was feeling more okay, but that had its own weird way of making me upset, as if it was too soon to be over the trauma of something so big. The respite was short-lived, and the pain returned, which I actually needed in order to say farewell.

Michael and I slowly told some people in the following weeks and, at some point, stopped sharing. In addition to my feelings of embarrassment, foolishness, and shame at having–in hindsight–announced the pregnancy too early, it felt like too much to broadcast online all at once. As a consequence, each sharing of the story one-on-one or in small groups is like getting stung again and again. At least each telling isn’t quite as bad as the previous one.

Since my physical recovery was on track, I didn’t take any time off work. I didn’t know what I’d do if I took time off anyway. Just sit at home, staring into space or at YouTube? So while my heart wasn’t in it, I continued to work. I spent a few days at home and once I came back into the office, I just hurried to the bathroom or took a walk if I felt tears coming on. It was like leading a double life. I wasn’t harboring any secrets on purpose, and I did tell a few coworkers, but the prospect of repeating the story became overwhelming, so I just left it. Where I work, we run a video site, and one of the big categories has always been “In Memory Of.” There’s an unusually high number of video tributes to babies with or lost to birth defects. We always wondered at that phenomenon. How bizarre, I thought, that I am one of the people who belongs in that category now. Now I understand, now I am watching these videos and crying my heart out for and with these families, and I probably will share an experience there as well, at some point. It’s painful but healing to get it out.

In the last couple months, the grief has ebbed and flowed. With the joyous holidays coming in at full speed, the trauma of September and October has been relegated to a slow simmer, though it will be a different Christmas for me this year. Most days are fine, though not a day has gone by where I didn’t think about our lost baby.

What’s made this experience bearable–besides time–has been the support and understanding of friends and family near and far as well as local counselors. Sympathies, words, hugs–they may trigger tears, but they all have helped. The genetic counseling program at CPMC has been as wonderful as one could expect, given the circumstances.

So, we take it one day at a time. I’m rational enough to know we’ll be fine in the end because that’s how it goes. But it will take a while for me to get there, and I’m a different person now–a person who’s interrupted a wanted pregnancy. Michael and I plan to try again, but if we are granted another pregnancy, that will be my third child, not my second. I will always be mother to the baby we lost.

Deb blogs at blog.debtjoa.com 

You can contact her at tjoady@sbcglobal.net