Steven and I are making breakfast when our 4-year-old, Sara, asks, “Mommy, did the baby stop growing because you didn’t love him?”
“No, sweetie. We loved him very much. He just stopped growing.” My voice is quivering. I run upstairs sobbing. How does she know? How does she know we didn’t love him enough to allow him to be born?
Two weeks earlier, the phone rang early in the morning. It was Kim, the genetics counselor with the results of my amniocentesis, but I was too happy to be worried. We had already started horse-trading names for our son (I liked Ezra. Steven wanted Heschel). I answered the phone. “Your amnio results are troubling,” Kim started, but her voice was blurry and confusing.
That afternoon, we sat down with her. “Your test results indicate Down syndrome, but we don’t know how severe it will be.”
“So our baby could be totally normal?” Steven pressed, and I was grateful for his question. Our son will have a technical imperfection, but it won’t impact his life? Kim was factual, analytic. I listened through a sieve, sifting out the scary things, only hearing the possibility of hope.
“Could the technician have made a mistake?” I asked.
“They did the test twice.”
Long silence. As if she could read my mind, Kim said, “We often imagine mild Down syndrome characteristics, but that’s not always the case. If you continue with the pregnancy, you’ll need to be prepared.”
Solemnly, she rattled off a long list of possible complications: distinctive facial appearance, mental retardation, gastrointestinal abnormalities, hearing and sight loss, thyroid disorders, congenital heart disease, pulmonary hypertension.
In a weak attempt at encouragement, she added, “While the majority of people with Down syndrome require intensive care their whole lives, many become semi-self-sufficient as adults.”
The next day, I told Steven, “I can’t do it. I don’t have the strength to have a baby with Down syndrome. Do you?” “I guess I’d consider it if you would,” he replied.
“We could have a baby with severe disabilities who dies at a young age. I couldn’t handle that. Could you?”
“No, no I couldn’t.” He sounded wounded and lost.
“I don’t want to tell people it’s Down syndrome. If we terminate the pregnancy, we should just say the fetus wasn’t viable.”
“Why not?” he asked. “We need to be honest so our friends and family can support us. Otherwise, they won’t understand the full range of our pain.”
”No,” I insisted. “This is a personal decision.”
“Are you afraid they’ll judge us?”
I didn’t respond. He was right.
We went to meet with our rabbi. “We need some spiritual guidance,” I said as we sat down in his study. He told us that in Jewish tradition, life begins at birth. He offered the analogy that if your arm is cut off, it’s treated with dignity because it was once a part of your body. But, since your arm can’t exist without you, it’s not a separate life. Judaism applies the same status to a fetus; until it lives outside the womb, it isn’t considered a separate life. For a fleeting moment, I found comfort.
“But rabbi,” I countered, “our faith also teaches us to choose life.”
“You are choosing life,” he said. “Your daughter’s and your family’s — the quality of life that you’ve created together. The Talmud teaches that when faced with a decision with what’s known and unknown, choose the known. Your daughter’s life is fully realized. You’re choosing to honor the impact your choice will have on her.”
I’m somewhat assuaged by his words, but mostly grateful for his nonjudgmental warmth. I believe we have the absolute right to make this decision, but our right to make it doesn’t make it any easier.
At the pre-surgery appointment, Steven asked me, “Do I have to stay for this?” Fear gripped his voice. I feigned inner strength, “You can leave. I’ll be all right.”
While I felt empathy for him, I was aware that although we were in this together, I was actually in this alone. I undressed and wrapped the itchy paper robe around my shoulders. The exam room was covered with snapshots of happy parents with their newborns and little thank-you notes on cutesy cards. I hated everyone in the photos. I hated the doctor for thumbtacking them to the bulletin board. I hated Steven for leaving me there alone.
At the hospital the next morning, I told the doctor, “Tell me before I get the anesthesia. I’m going to spiritually connect with the baby, metaphorically hold his hand, say goodbye, and tell him I’m sorry. It’s the least I can do as his mother.”
Suddenly the nurse was shaking me awake. The procedure was over. I didn’t remember getting the anesthesia; the nurse said post-surgery amnesia is common.
Despair filled me. I didn’t say goodbye. I ended the possibility of his life and failed to be there with him when I did it. “I’m sure you did it,” Steven assured me later. “Just because you don’t remember, doesn’t mean you didn’t do it.” I nodded, but didn’t believe him.
I’m tired, bleeding, and sore. I barely slept that night, but refused to take the Xanax the doctor prescribed. “Mommy, are you home?” Sara’s sweet voice calls out when she and Steven return from a trip to the park. I don’t answer. I hide under the blankets and pillows. Go away, I think. I don’t deserve your love.
I don’t regret our decision to terminate my pregnancy, but I’m left with a void that neither the tradition of my Jewish ancestors nor the politics of my gender can heal. Somewhere in the murky, unknown miracle of life exists a word to describe the loss of a baby who is not born, and of a fetus who is so much more.
Debbie Findling of San Francisco is a strategic philanthropy adviser and co-founder of the Jewish Skinny, a weekly e-newsletter. She co-founded the Jewish Community Memory Garden, the world’s first Jewish place for mourning pregnancy losses and newborn deaths. A version of this piece first appeared at Kveller.com.