Steven and I are making breakfast when our 4-year-old daughter, 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 and sob uncontrollably. 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 amniocenteses, but I was too happy to be worried. We had already started horse-trading names for our son. (I liked Ezra. Steven didn’t. He liked Heschel. I didn’t.) I answered the phone. “Your amnio results are troubling,” Kim started. Then she said something about Down syndrome, but her voice was blurry and confusing.
That afternoon, we met with Kim. “The amnio results indicate Down syndrome,” she paused to make sure we understood. She continued, “But we don’t know how mild or severe it will be.”
“So our baby could be totally normal?” Steven pressed, and I was grateful for his question. My niece has two webbed toes, a genetic gift from her father who has the same quirky feet. No big deal. 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, trying to find a crack in the facts.
“They did the test twice. The results were the same.”
Long silence. I filled it with images of Corky Thacher, the lovable Down syndrome character on “Life Goes On.” 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 without enthusiasm, “While the majority of people with Down syndrome require intensive care their whole lives, many become semi self-sufficient as adults.”
The next day, during a drive along the beach, 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.
On our way to meet with our rabbi, I informed Steven, “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?”
“No, it’s just none of their business. If we tell people, they’ll imagine what they’d do in our situation, and then it becomes about them, not us.”
”You mean, you’re afraid they’ll judge us.”
I didn’t respond, because I know he’s right.
“We need some spiritual guidance,” I said to the rabbi as we sit 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 a fetus lives outside the womb, it isn’t considered a separate life. For a fleeting moment, I found comfort in this analogy.
“But Rabbi, our faith also teaches us to choose life,” I countered. “If we terminate the pregnancy, we’re not choosing 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 what’s unknown, choose the known. Your daughter’s life is already fully realized. You’re choosing to honor the impact your choice will have on her.”
I am somewhat assuaged by his words, but mostly grateful for his non-judgmental warmth. I believe we have the absolute right to make this decision, but our right to make it doesn’t make it any easier to make. I find comfort in the rational knowledge that a fetus is a fetus. Period. However, this too only provides partial relief. Any woman who’s strolled longingly passed Baby Gap, who’s marveled at the elasticity of her ballooning belly, and who’s made it to 18 weeks in the counting ritual, knows that a fetus isn’t just a fetus when it’s growing inside of you.
At the pre-surgery appointment, Steven turned to me in the waiting room and asks, “Do I have to stay for this?” Fear has gripped his voice. I feigned inner strength, “No, you can go, I’ll be alright.”
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, “Please tell me before you give me the anesthesia.” On the way in, I’d informed Steven: “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.”
“Debbie, Debbie,” the nurse said as she gently shook me awake. “The procedure’s over.”
“What? What? I don’t remember getting the anesthesia.”
“Oh, post-surgery amnesia is really common,” she said flippantly.
Despair lunged onto 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 told Steven this when he came into the recovery room. “I’m sure you did it,” he assured me. “Just because you don’t remember, doesn’t mean you didn’t do it.” I nodded in weak agreement, but I didn’t believe him.
I’m tired, bleeding, and sore. I barely slept the night before, but refused to take the Xanax the doctor prescribed. I’m not worthy of a restful sleep. Steven takes Sara to the park. I lie in bed with no concept of time when I hear them return. “Mommy, Mommy,” her sweet voice calls out from downstairs. “Mommy, are you home?” 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. While I don’t fully embrace that we aborted merely a fetus, I do believe we stopped our baby from being born. 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.
Coming to Terms with Medical Termination
‘Do You Have Any Kids Yet?’ is a Question I Hope to Stop Hearing Soon
My ‘Invisible Illness’ Makes Me Feel Different from Other Moms