Today, our baby is the size of a pea.
Today, she’s the size of a grape.
We, like every excited soon-to-be parent, followed our baby’s growth each week with joy and pride. As a mother of advanced maternal age (I was 36 at the time), we chose to have a Chorionic Villus Sampling (CVS) to test for any abnormalities or genetic issues and were thrilled to learn that we were expecting a baby girl and everything seemed normal. With five nieces at the time, I knew the drill with baby girls and couldn’t wait to dress our little girl in their hand-me-downs. I dreamed of a gaggle of little girls running around my childhood home in Idaho jumping on the trampoline, digging potatoes out of the dirt with Grandpa, and baking in the kitchen with Grandma.
We traveled early in the pregnancy to Russia and Norway, and we dreamed together of the life we would have with our little girl. We explored the neighborhoods I had lived in in St. Petersburg and Moscow where I studied abroad. We visited the towns in Norway where my husband spent his summers growing up. We finally spent a few days in northern Norway trekking the midnight sun and took a cruise through the majestic fjords of Norway. It was idyllic and our last big trip before the baby was due — on Valentine’s Day. Could it be more romantic and perfect?
Because my doctor works at a teaching hospital, our pregnancy got more attention than most. We had sonograms every four weeks, I had no idea this was more than usual, because it was just how they did it and it was my first time. In retrospect, in another less teach-y hospital, we wouldn’t have had a sonogram at 16 weeks, but lucky for us, it was standard in our practice. The maternal fetal medicine group was across the lobby, so we were able to have the sonogram on one side and then meet with my OB on the other.
On September 5, 2012, my husband joined me for our 16 week sonogram. We squeezed each other’s hands when we heard her little heartbeat. We watched with wonder as the technician measured and commented on each little body part. I’m not sure when she realized, but, in retrospect, she grew less and less cheery in the announcements of the length of this, the size of that. As she left, she said the doctor would be in to talk about the diagnosis. Diagnosis?
The wait for the doctor sure felt like a long time. Then a doctor we had never met walked in. She had beautiful, long brown curly hair.
Dr. F sat in an office chair and rolled over to the exam table and spoke softly. Our baby was missing an arm bone, the ulna. She was measuring very small, too small. She had an extreme form of skeletal dysplasia. She was not only going to be a little person, but her lungs would not grow large enough for her to breathe. Her lungs would not grow large enough.
Incompatible with life.
How can you argue with that? It seems pretty clear, but it took a while to sink in. Hours in fact. We asked if it were possible that she could grow out of it. Could we wait another week? Could Dr. F write down our diagnosis? She couldn’t be 100 percent sure, but she suspected it was thanatophoric dysplasia. She handed me a slip of paper with the words scribbled in blue ink, and we walked out of the office and waited to see to my OB.
I’ve learned that in crisis, I don’t cry. I shut down.
We waited. I didn’t know what to do with myself. I sat, in shock, hands in my lap and shaking, waiting. An older woman, a stranger, walked up to me and maybe she took my hand, maybe she didn’t, but she looked in my eyes and said “Are you OK?”
I was not only surprised, but also touched by her intimacy and boldness. It may be the only time in my life that a complete stranger has walked up to me to ask if I was OK. I’m sure it was written on my face, but I had thought I was holding it together, and I know I wasn’t crying. How did she know? For the rest of our wait I just focused on trying to look OK, and trying not to make anyone else feel uncomfortable. Trying to be invisible.
I’ve learned that in crisis, I don’t cry. I shut down. Emotionally, I compartmentalize it and wait for more information. I put it in a box on the seat next to me and wait until I know exactly what it is.
We sat with my doctor and had an awkward conversation about options. She knew where this conversation was going, where it had to go. I asked if we could give it a week to see if she could miraculously outgrow the diagnosis, which now seems silly. I asked if our insurance would cover it if we decided to terminate the pregnancy. I asked if it was legal to have an abortion at 17–18 weeks in the state of New York. How long would it take? What would happen? Would it hurt?
The word abortion is so politically charged that it took a long time for me to be willing to call it an abortion. I have always been pro-choice: I believe that a woman has the right to abort a pregnancy. Even so, inside I knew, and I thought, and I probably said many times “but personally, I would never have an abortion.” What hubris. What foolishness. What a lesson.
We finally left her office and tried not to make eye contact with anyone on our way home. We rode the subway holding hands in silence, staring at the floor. We couldn’t wait to be in a private place where we could pull out that slip of paper and find out what we were even talking about. I received a voicemail from our geneticist who implored us not to Google anything and to come in as soon as possible.
We made an appointment with her for the next day and settled in with our laptop. There was one documented case of a child surviving until eight years old with thanatophoric dysplasia.
Incompatible with life.
Thanatos, the Greek god, is the personification of death.
Every link echoed what we were slowly realizing. There was no way we could continue the pregnancy. If our baby even survived to term, she would live in uncontrollable pain. She would live only a few hours and only with extreme intervention. We looked at each other, and we knew.
We had to protect her from life. Her body wasn’t able to live outside my body. We had to care for her the best that we could, and it meant the unthinkable.
The geneticist was amazing and exuded warmth and understanding. She said it was OK if we cried. We wanted to know what could cause this, how, who…. Was there anything that could be learned from our experience? Could research from our loss help others? What really does our baby have? Is it likely to happen in another pregnancy? What are our chances of having a normal pregnancy after this one? Could we try again?
I called my mom, and I remember asking “Are you at work?” How does one explain? She said she was washing dishes. I blurted it out, “Mom, it’s not a viable pregnancy.” It means everything, but it also means nothing. I don’t remember the rest of the conversation. She was on a plane out of Idaho Falls within hours. She held me in my bed as I wept.
Every morning I woke — if I had slept at all — from the worst nightmare I’d ever experienced. They say that intense grief can cause physical pain. It felt like a brick on my chest. Crumpled tissues piled higher and higher on the floor beside my bed. I cried until my tears were dry and my face hurt. We went for a long walk. We went for a nice lunch. I don’t remember many of the conversations as I told my siblings. Did my mom make those calls? I can’t remember.
Several of my friends were travelling at the time. Judy and her family were in Canada, and she promised to help me track down others and made arrangements to come be by our side. Lori was driving on the autobahn in Germany, and she cried with me on the phone. I called others who were at work on a Friday afternoon because I needed to tell them right away. I felt a responsibility to tell many of my close friends in person, which was difficult, but important to me. Thankfully, we had not yet made a public announcement about our pregnancy on Facebook, so we didn’t have to share what was happening in our collapsing world. Anyone outside of our closest circle learned only that we were losing the baby.
My doctor wrote a phone number on a slip of paper. That’s the currency you use when you are learning about fatal abnormalities and arranging for abortions. Slips of paper with details scrawled in blue ink. Slips of paper offering a lifeline. Even in New York City, it seemed hush hush and clandestine. Graciously, all of our appointments were very early in the morning, well before the hours of regular OB appointments, so we didn’t have to face the beautiful, swollen bellies full of promise.
I called the phone number and left a message. The doctor didn’t call me back until very late. So late I had almost given up and was starting to panic. If we didn’t get on the calendar, we’d have to wait another week. My phone rang at about 10:30 at night and he told me the details. Show up at 7 in the morning, take some ibuprofen. It will take two days to prep, and then the surgery will be on Friday. OK. See you in the morning.
When the doctor arrived in his office the next morning, he had spilled coffee all over his white jacket. I asked, and he talked briefly about how it is to be an abortion doctor, the news stories, the threats, the political climate. He did a sonogram to check one last time to make sure there hadn’t been a mistake. He turned the screen away from me so that I wouldn’t have to face her. He did this to protect me.
The ten days between the first sonogram and our termination was a very hard time. I had just unpacked all the maternity clothes that my sister and sister-in-law had sent with such joy upon learning we were pregnant. I needed to get it all out of our apartment as soon as possible. My friend Jill came to help us pack it up and move it back into storage. We went out for margaritas. I worried the bartender would judge me, since I was just on the edge of being visibly pregnant. What was I doing sitting at the bar and having a drink? Would they just judge or dare ask? Whisper about my choices?
My colleagues and an old friend sent beautiful flowers. My brother brought us delicious take-out, and when he stood weeping in my dining room I thoughtlessly asked, in earnest, why he was so upset. I’ll never forget him standing there with tears streaming down his cheeks. I had no space to offer compassion for anyone else’s feelings about this loss. It’s a moment I’m not particularly proud of.
Once our decision was made, it was so hard to have her inside me, to still be pregnant. I knew that she was just developing her sense of hearing. She could hear me sing songs to her, she could hear my husband play the guitar for her. She could hear us plotting her demise. I couldn’t stop thinking about her hearing our conversations, our deliberations, our pain. Could she understand? Who was she? How could I never meet her?
We had a nickname for our baby, but once we knew what we were facing, we couldn’t use it anymore. We started referring to her as “the pregnancy” and the abortion as “the termination.” Our caregivers took our cue on what language to use. I was given the contact information for a social worker, but at the time I didn’t understand what she would do for us. We never considered a funeral service; we were too overwhelmed with the logistics of getting through the procedure. I sometimes wish now that we had formally named her for our friends and family so that they would know how to refer to her without having to say the words abortion or termination or refer to her as that pregnancy. Maybe if people knew her name they would think to ask about her. My mom and I call her Ora, and you can too.
We all went out for lunch at Diner and tried to act like everything was normal, but I promptly threw up the moment we walked into my home.
My husband came the first day of the two-day prep. The doctor inserted laminaria (small sticks made of seaweed) into my cervix that would slowly expand the cervix to prepare my body for the D&E (dilation and evacuation) that would happen on Friday. It felt like it sounds. Awful.
I went to Duane Reade to fill a script for a painkiller and sat on a bench on Madison Avenue in the crisp sunny morning waiting for it to be filled. Then, I went to a work meeting I had convinced myself I couldn’t miss. I had to get up and leave halfway through in a cold sweat.
Jill came with me the second day and held my hand as the doctor inserted the second round of sticks. I’m not sure she realized when she offered to come with me that she’d be holding my hand in the exam room, but when the time came, she could see that I needed her. The doctor told me to stop bearing down and pushing, which was my body’s natural response to the intrusion. It was nearly impossible to stop my body’s natural reaction to protect itself.
We drove to the airport to pick up Judy. We all went out for lunch at Diner and tried to act like everything was normal, but I promptly threw up the moment we walked into my home. I lay on the couch with my eyes closed for most of the evening and just listened to them talk, their hushed voices tethering me to the room, while I drifted in and out in a haze of pain and medication.
The doctor who performed our abortion is like a ghost. Since my abortion, I have been in that office maybe fifty times and have never seen him again. Of course, it makes sense. These doctors are angels, who show up to help women who are living a nightmare. He provided great care, but to be honest I didn’t want to talk to him. I will always be so glad for the work he does, but I had a hard time sharing niceties with him because I hated that I had to be in that room. And let’s be very clear: none of us wanted to be in that room.
On Friday September 14, 2012, a day sandwiched between two of my brother’s birthdays, we arrived at the hospital early, maybe even before the sun came up. I remember being so glad that it wouldn’t have to be on one of their birthdays. This day would be its own day for me. We had a check-in with a nurse who drilled me extensively over minor, unimportant details of my medical history. There was one other couple. None of us spoke or made eye contact as we waited.
They called my name first.
Judy hugged us, and Tom and I were left alone for a few moments. We didn’t know what to say to one another. I started wondering about questions we’d never thought to ask. I worried about complications. A D&E is much safer than childbirth, but everything carries risk. Soon they asked Tom to leave, and I was alone. The nurses asked a few last questions, and I signed the paperwork. They had to be sure that I had not been coerced into having this procedure. The nurses were thoughtful, warm, and kind as they wheeled me into the operating room. I couldn’t wait to go to sleep.
When I woke there was a lot of blood, so much blood I could feel it pooling on the bed. It felt like emptiness and openness between my legs. I sucked on a few ice cubes and drank some ginger ale. I felt so much relief. Physically and emotionally. It was over.
We never got a definitive diagnosis. It was a skeletal dysplasia caused by a spontaneous genetic mutation. Our tissue, our pregnancy, our baby was sent to a research hospital for more testing, but when we finally got news back they said it was a genetic mutation that has not yet been identified.
I am writing my story in solidarity with others who have suffered unspeakable, heart-wrenching loss. I am writing this because I am a woman with a voice, and a vote. I will not be silenced.
I am writing this because I am tired of the narrative of politicians who speak without informing themselves and who legislate based on gross untruths.
I will not be shamed by those who believe they have the moral authority to come between a woman, her body, her choice, and her family.
Mama of a 3-year-old boy and a 1-year-old girl living in Queens, Jocelyn grew up on a potato farm in Idaho and recently left her job at Cooper Hewitt, Smithsonian Design Museum, to spend time with her family and to contemplate her next move. She is a lover of Russian poetry and tacos.
Editor’s Note: This piece was originally published on the author’s own Medium page and has been republished on ThinkProgress with her permission.