Remembering Amy in Head and Heart

I have been carrying Matthew (“Parents Face Agonizing Decision” by Phyllis Theroux, Dec. 15 and 16) and his family around in my head and in my heart since last week. I can feel for his young parents and his grandparents.

Twenty-three years ago this New Year’s Day, at the age of 19, I gave birth to my first child, Amy. But both Amy and her parents were much more fortunate than Matthew and his. The “right-to-die” was not yet an issue, and our doctors were not as fearful of litigation as they must be today. Instead, their thoughts and words seemed to lean more toward the issue of what is humane.

Very ill, I slept long and hard after an emergency C-section, only to wake to terror--no one would get my baby, no one would answer my questions. Later I learned that they were waiting for my 20-year-old husband to tell me what had happened. Unbelieving, I half-heard him try to begin--there had been something wrong with our baby, a girl. I wouldn’t let him finish, could only say over and over, “It’s all right; it can be fixed.” When I finally let myself hear him, I learned that my baby had died while I was sleeping.

Amy had been born severely brain-damaged--blind, paralyzed by advanced hydrocephalus. My husband had to make the decision left to Matthew’s mother--to authorize surgery or to let Amy die. The team of doctors at the hospital explained everything to him, but did not push for surgery. Instead they told him that even with surgery, most likely Amy would not ever be able to go home. She would exist only, not live. She could conceivably have pain, and there would be no way to predict how long she would live. As young as he was, my husband made his decision, confident that it would be mine also. Amy lived to be 10 hours old.

So many years later, even though we know it was the right decision, both of us still carry grief and--yes, guilt--around with us. Our marriage did not last either.

I now have two beautiful kids, yet each and every New Year’s Day I think about Amy. She is with me still. I look at my 21-year-old daughter and wonder: “Would Amy have looked like this? Would her hair have been curly? Would her eyes have been blue?--or greenish like my son’s?” But with all the wistful questions comes always the thought that at least Amy did not linger in pain, that she is somewhere better--perhaps my plump, beautiful, comfortable grandmother with the sparkling blue eyes and snuggly lap is singing to her the same songs she sang to me. And always comes the thought that because the doctors and the hospital were able to think of human beings rather than court cases, we and Amy were all spared the pain that is so evidenced in Theroux’s narrative.

MARJORIE JANSZ

Garden Grove