2003, Southern California

By C.J. Elliott

“Mommy?”

My 3-year-old son stopped working on the sand castle he was building with his friends and looked up at me. He looked stern. “Why did you kill our baby?”

Time stopped. The noise of traffic, children playing on the playground, the water lapping at the bay, seemed to mute. Eight little eyes turned on me like searchlights.

“I didn’t kill our baby,” I said quietly. “He was very sick.”

My friend, Alice, stepped in to the void. “God has a special plan for each of us,” she said. “And we can’t always know or understand God’s plan. Your baby is fulfilling God’s plan for him and is with God in heaven now.”

“Then why did you say you did?” he asked. He looked confused. “Why did you say you killed him? What did you have to decide?”

“God decided,” Alice said.

“Oh,” he said. “I thought Mommy did.”

Later in the car, I said to my son, “I did say that, Sweetie. You were right; you didn’t imagine that. I did cry out that I had killed my baby.”

He waited for an explanation.

“I was so sad, and I felt so awful, after the baby died. I thought something I had done had caused him to get sick. But the doctor said it wasn’t my fault. He said that sometimes, babies just are created with parts of them missing, and no one knows why. And it makes them very sick.”

When we got home, I called my husband and bawled. I could barely get the words out. Because it wasn’t the whole story. And I felt like I was always walking the line between maintaining the privacy of my pain and being honest. And the whole story was not one everyone would understand.

Arthur was born at 20 weeks, 4 days. He was dead when he came out of my body, limp and soft and warm. We had been waiting for his birth, grieving his birth, knowing he would die. We were ready to hold him to our hearts until he passed away, our son, our love. But he let go while he was still in my body, probably fading, a midwife friend said, when my placenta separated from the uterus, and letting go while still inside that warm, safe place.

I like to think that he knew only love. I like to think that he felt my thoughts as I was in labor, knew I loved him. Knew my grief. I like to think I felt his soul in me, with me, as we labored together. I know God sat in my heart as it squeezed out grief, as I felt my life rip open.

God sat with me. That’s all. This wasn’t something anyone could fix – God or man. It was just something handed to me. I still don’t understand why. But I tried to be as open to what was right as I could.

I labored with Arthur for 11 hours alone, nurses coming in periodically to inject me in the rear with a big syringe. I know others won’t understand. But those injections, and the seaweed Laminaria implanted in my cervix to slowly open it up, were done with love.

I labored through the night, holding my belly between bouts of vomiting and telling him that I love him. I love you. I love you. You are my own, my son, and I love you. And this is not a body to grow up in. I love you, and I cannot let you live through what you will live through. And I am so sorry.

When I was 9 weeks pregnant, I had a sort of waking dream, a knowing. “It’s a boy,” I told my husband, “and something’s not right.”

The doctor recommended an amnio at 16 weeks. I was 38. “I think you should get one,” he said. So we did.

At 17 weeks, the genetic counselor called. She had the results of the amnio.

“First of all, it is a boy,” she said. “However, there seems to be a small piece of one of the chromosomes that is missing.”

“A missing piece.” I stopped climbing. Is that a problem?’

“Well, we’re not sure.” She requested that my husband and I come in for blood tests to see if we had the same missing piece. “We’d also like you to come in to meet with our genetic-counseling staff.”

When we met with the genetic counselor four days later, she showed us photocopies of our own chromosomes and of our son’s chromosomes. Ours were intact. But marked in pen on our son’s photocopies were lines showing where the missing piece should have gone. It seemed small enough.

“Why is it a problem to be missing that?” I asked.

“We aren’t sure, exactly, what genetic information is on that particular part of the chromosome,” she said. “But we do know that at least one gene that helps in heart formation is located there. Your son will probably have heart problems. He may require heart surgery.”

A flood of relief coursed through me.

“Heart problems are nothing,” I said. “He’s our son. We’ll do everything we can to help him.”

“There may be other problems,” she said. “We just don’t know.”

We left the doctor’s office with information on a fetal cardiologist and where to get more information about chromosome deletions.

My husband went back to work. When he returned, he had a stack of papers he’d had faxed over from an organization that specialized in chromosome deletions. There were eight research studies on our son’s particular deletion, along with information on a few other families who had received the same diagnosis. There were only 12 on record worldwide. One was in our city.

I began reading through the papers. They described physical disabilities – those, I thought, I can handle – small head/brain, malformed genitals and legs. But as I read, my heart began to crumble. With each additional issue, the despair spread up from my heart until my whole body ached.

Mental retardation – I can handle that, I thought. My son had a friend with Down Syndrome. She was happy and loving.

Autism spectrum disorders – I began to have doubts. What if my child could not love? What if my child and I could never connect? My heart began to ache.

And then – emotional disturbance. Many studies described violent behavior, inexplicable, wild, out-of-control behavior that seemed to be organic. Parents in the article described outbursts that came out of nowhere, destruction of whole rooms in houses. They described medications working for a while, and then inexplicably failing.

I began to weep.

I pictured our quiet home. Our loving household. I pictured visits to the library with my cerebral 2-year-old. Hours spent doing puzzles, drawing, reading, going to museums. And into this picture I inserted a child who could neither connect with us, nor understand his world, nor control his behavior. I can’t do this, I thought. I can’t do this.

And then the flip side: terminate the pregnancy. Could I do that?

For the next two weeks, I tried to care for our 2-year-old during the day while I – and sometimes my husband – met with every kind of expert I could think of to gather information for our decision. Nights, I prayed for clarity – and wept and raged.

We met with a prenatal cardiologist, a child psychiatrist and special-education teachers. I talked to a priest and a Zen Buddhist teacher. I spoke with friends with disabled children – who were surprisingly open to my dilemma – and the perinatologist who had delivered my first child. And I spoke with my brother – the only family member who knew what we were considering.

I also met with the other woman in my city whose child had exactly the same diagnosis. She was joyful, but she also stressed the challenges. Her son was just a year old.

I went to a therapist. She suggested that I look into adoption. If I didn’t feel that I could raise him, perhaps someone else would. I spoke with adoption counselors and sat with the idea. And a voice came back loud and clear. No. This child should not be born. He will never have what he needs, and I can’t put him into that life.

Finally, I spent a day at a school for disabled kids, in a classroom with children who were autistic and mentally retarded. It was there, sitting there among them, each with his or her own aide, that I heard the voice so clearly: “No.”

No, this is not a life to put him into, if I can release him from it. No, I cannot knowingly put him into a body and mind that will never be well. No.

I called the hospital to schedule an appointment. When the time came to go, I felt numb. I can’t do this, I thought. We came home.

The next day, things seemed clearer. We would induce labor. We would hold our son to our hearts until he died. He would be born and die with dignity. We would name him. We would bury him with our family.

This is what we would do. It was the best we could do, as parents. It was the best we could do.

C.J. Elliott is a freelance writer and mother of two living children and one angel.

Posted by Elizabeth Armstrong Moore on Friday, June 29th, 2007 | Email This Post

This entry was posted on Friday, June 29th, 2007 at 12:02 am. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.