When Prenatal News is Grim

When Prenatal News is Grim by Claire MacKenzie

Many pregnant women over 35 undergo prenatal testing to ensure their baby is developing normally.

Most of the time, everything’s fine. But when it’s not, a terrible decision must follow. Claire MacKenzie tells of the choice that she made-and the doubt that she has lived with ever since

It was on a beautiful, sunny Friday morning in spring that I found out. I was at work when my doctor called.

“There is a problem with the amniocentesis,” she said. “It’s Turner’s syndrome. Your baby is missing a sex chromosome.”

She added, “You’d better contact the hospital right away. You may want to make a decision to terminate your pregnancy, and you don’t have much time left.”

I don’t remember the rest of the phone call, or even if I said good-bye. The doctor’s voice suddenly seemed to come from a long way off, and I couldn’t catch my breath. I don’t know how long I sat there before I made myself calm down, so I could call my husband and my younger sister and ask them to meet me at home. Then, I told a colleague that there was something wrong with the baby and I had to leave work.

I didn’t care what the doctor said, I was determined to continue this pregnancy. We had already named our baby – Lily – l felt sure she was a girl. At home, with my sister, I looked up Turner’s syndrome in our medical manual. Normal babies, I read, have two sex chromosomes: XY (male) or XX (female). In a Turner’s baby, one of the X chromosomes is missing or defective.

Our baby was a girl but, because she was missing a sex chromosome in every cell, she would never develop as a woman: no breasts, no ovaries. She would never have a baby. She would
probably grow to be only about four-and-a-half-feet tall. There were other possible problems: a neck webbed with extra folds of skin; arms that turned outward from the elbows; heart and/or
kidney disorders; learning disabilities.

My sister and I were in tears. “Maybe the disabilities wouldn’t be too bad,” I said. “It’s okay to be short. And maybe….”W e reassured each other that each of the syndrome’s problems could somehow be overcome.

When my husband, Richard, arrived home, I ran to him and said, “It’s not that bad. We can handle it. Everything is all right.”

“It is not all right,” he replied. “It is serious.”

Just how serious, I began to understand that afternoon when we met with a geneticist. She told us that our child could have hormone supplements to try to give her some secondary sex characteristics, but the hormones would stop her growth. If our child lived a normal life span, she probably wouldn’t be able to take care of herself because of learning disabilities. The geneticist also pointed out that some Turner’s babies die before or after they are born from
heart or kidney ailments.

Three months earlier, in late December 1989, Richard and I had been ecstatic when the doctor confirmed that I was pregnant again. At 38 and 36, we weren’t getting any younger, and it was
high time that Annie, our 3-year-old daughter, had a younger brother or sister to play with.

Richard runs his own computer business, and I’m an editor with a book publishing company. A few years ago, we’d bought a house in the Beaches area of Toronto, with room for a growing family. Now, we were getting a kick out of fixing up a nursery again. Annie was excited when I told her about the baby growing in mommy’s tummy. Often, she would pat my stomach gently, lean close and whisper, “Hi, baby.”

From the beginning, I told my doctor: “I won’t be having amniocentesis. By the time the results come in, I’d be 20 weeks pregnant. I could never terminate then, with the baby already kicking
in my womb.”

“You’re over 35,” she replied, “and I really think you should go for counseling. And don’t consider yourself pregnant until you have the amniocentesis results.”

I was crying when I left her office, and from that day, I feared the worst. I started to have bad dreams. I kept imagining how terrible it would be to end the pregnancy.

Late in February, when I was 12 weeks pregnant, I went to the hospital for genetic counseling. The counselor told me that I was in a high-risk group for Down’s syndrome. She didn’t mention
Turner’s syndrome. I asked about another test, chorionic villus sampling (CVS), which can be done at 10 weeks, several weeks earlier than amniocentesis, which is done after 14 ½ weeks. But the counselor said that CVS tends not to be as accurate as amniocentesis and carries twice the risk of causing a miscarriage,

When the counselor asked me to make an appointment for the amniocentesis, I balked. “Why not make the appointment now,” she suggested. “You can always cancel it later.”

But I didn’t cancel. In late March, I went to the hospital to have the test. The doctor, watching the fetus on an ultrasound monitor stuck a needle into my womb to withdraw the amniotic fluid for testing. I was scared the needle would hit the baby, but it didn’t.

Three weeks later, I got the grim news.

I cried for hours the next morning, Saturday. I called my doctor and asked her how difficult it would be to bring up a child like ours. She said, “It’s like bringing up any child with a disability,” and she refused to advise me on whether or not we should terminate.

Richard and I tried to stop talking about our “baby” and to call her the “fetus” instead. By Sunday night, two days after I got the amniocentesis results, I finally agreed with him that we
should terminate. Richard never pressured me. He just waited for me to come to the same conclusion. I guess I finally did. But I’m still trying to figure out if we were right.

I knew that bringing up a child with a disability would put a lot of pressure on our marriage. Much of the time we used to spend with our daughter would have to be devoted to meeting the new child’s special needs. Despite the emotional and physical pain of terminating, I told myself, I would save everybody the suffering and anger and frustration of living with a disabled child. What I didn’t know was that the emotional hurt would go so deep or last so long.

On Monday, I had an ultrasound examination, as a backup to the diagnosis of Turner’s from the amniocentesis. Two days later, less than a week since we’d received the test results, Richard went with me to the hospital for the termination. I lay down on the examining table, and the doctor put a needle in to my womb, which “put the baby to sleep,” she said.
Several hours later, the delivery was induced by medication. In spite of a morphine injection, the Iabor pains were terrible. I was sick and delirious.

I delivered our baby the next morning. I asked the nurse to wash her and bring her back to us. The nurse returned with the baby wrapped in the disposable towels I had been lying on during labor.

It felt all wrong. This was our baby. She should have been snuggled in a little pink
blanket. I was so mixed up; I felt all the joy a new mother does. Our baby was beautiful, with delicate little fingers. She had my husband’s mouth and nose. I just couldn’t believe she was dead.

“Hello, my little baby,” I said. “It’s mommy and daddy.” I called to my husband, “She’s so beautiful. Come and look.” But Richard couldn’t look because he was crying so hard. He told me he was crying because of me. He hadn’t realized that I thought of our baby as a real person.

We had the funeral two days later.

The following week, I returned to work. I told people the baby had died, and the doctors didn’t know why. I had to stop myself from blurting out that I had killed her. I felt so guilty that, for about four months after the termination, I wanted to kill myself. It was only our daughter,
Annie, that kept me alive. Now, I’m terrified something will happen to her. I watch her closely and I cherish her all the more.

I keep thinking that if I had decided to continue with the pregnancy I would be happier now. But I never got to choose between something happy and something sad. The tragedy started when our baby was conceived with a defect. A happy ending was never a possibility.

There are three aspects of prenatal testing that continue to haunt me. First, I think women should be encouraged to have the earlier CVS testing. It is too traumatic to terminate a wanted pregnancy at an advanced stage.

Second more information should be immediately available for women when they discover their baby has a defect. It is too hard to search out the information yourself when you have only a few days to make a terrible decision.

And third, women who terminate need group therapy right away. I had to wait seven months. In the meantime a woman from the hospital who had also terminated a Turner’s baby volunteered to meet me. She was reassuring. So was my new family doctor and a psychiatrist I saw several
times. But it was the women in the self-help group who finally helped resolve many of the doubts and guilt feelings that stalled my recovery. I finally felt positive enough to become pregnant again, and the results of the CVS test indicated a healthy baby (our child was born earlier this year). Richard and I are so happy. But we still mourn Lily, who will always have a
special place in our lives.

Claire MacKenzie isn’t my real name. Right now, only my family and my husband’s, and three of my friends, know what really happened to my baby. They say that I judge myself too harshly. One of them reassured me that I had made the right decision. “Surely,” she said, “a
mother’s worst fear is to have a child with a birth defect.”

“No,” I answered”, the worst thing is to have your child die and to be responsible for that death.”

My mother tells me I made my decision because I am such a good mother, that I did it to save my baby from all the pain she would have experienced.

Maybe, someday I will believe her.