The Unfinished Child, a Story of Down Syndrome, Love, and Choice (and a Book Giveaway) Part Two

The Unfinished Child, a Story of Down Syndrome, Love, and Choice (and a Book Giveaway) Part Two May 31, 2013

**Update: Jeannie is the winner of a free copy of Theresa’s book. Congratulations!

Yesterday I posted the first part of an interview with Theresa Shea, author of The Unfinished Child. Here’s part two:

As the parent of typically-developing children, what prompted you to write the book? Do you see any parallels between your experience as a mother and the mothers included in these pages?

Like many women today, I didn’t start my family until I was in my mid-thirties. To be honest, I didn’t fully understand that I was in a high-risk category because of my “advanced maternal age.” I felt young, and I was healthy, but because I would be thirty-five when my first child was born, I had the big red RISK stamped on my file.

In hindsight, I can see how unprepared I was for the ethical dilemma of prenatal testing. Here in Canada, doctors are required to give women who are thirty-five and older standard genetic counseling. I remember listening to the doctor’s facts and figures and nodding in all the right places. I remember extending my arm and allowing the doctor to take my blood. I never thought anything would come of it.

The phone call came on a Friday afternoon. I was working, so by the time I got the message to call the doctor’s office, it had already closed. My husband and I spent the weekend in a distressed state; I was convinced something was wrong with my baby.

On Monday I went in to the doctor’s office. The alpha-fetoprotein test had shown I had a 1 in 268 chance of having a baby with Down syndrome – that number was higher than normal and of apparent concern. I was informed that the next step was to have an ultrasound to determine if my dates were correct and to look for some soft “markers” that might indicate the presence of Down syndrome. (The scene in the book where Marie asks the ultrasound technician to do a very thorough examination comes directly from my personal experience.) Since both the blood test and the ultrasound are not reliable indicators, however, the doctor offered the option of amniocentesis.

In the end, my husband and I decided that entering parenting with such a large degree of fear was not the right course of action for us. We declined all other testing, sought the services of a midwife, and stopped going to the doctor. The process showed me that doctors, because of litigation issues, are too often forced to look for what might be wrong with a pregnancy. Midwives, on the other hand, tended to look for what was right.

My husband and I went on to have two more children, and we didn’t have any testing. We were moral cowards of a sort, but that felt okay to us, and we went with that decision.

But the fear had been planted, and I was angry that my pregnancy had been “ruined” by a seemingly innocuous blood test. It got me thinking that in the history of human reproduction, the children born in the 1960s and after are really the first to grapple with prenatal testing and the decisions that accompany those tests. Previous generations, for better or worse, simply took the children they got.

I began to think about all the women I knew who were going through similar experiences in having their children “late.” I watched couples I knew wait long days for their amnio results to come back. I heard stories of friends who’d terminated pregnancies based on the result of their prenatal test(s). I listened to stories of women who returned repeatedly to fertility clinics in the hopes of having biological children. And I read fantastic headlines in newspapers that proved truth is stranger than fiction (“Mother Gives Birth to Son’s Baby”). Yes, there was a story to be told, and when my second child was six months old I began to write The Unfinished Child.

(For more of Theresa’s thoughts on these matters, go to How Far is Too Far?)

I have written extensively about prenatal testing in a non-fiction form, and I’m very grateful to read a fictional account of prenatal testing through your book. What advantage do you see in offering this story as a work of fiction? 

I think that fiction allows readers to enter the story on an emotional level rather than on a purely cerebral one. The reader knows going in that the author is not limited to presenting only the “facts.” In many ways, I think that fiction creates an arena in which readers are more likely to sympathize than judge the characters because they so often get inside the characters’ thoughts and have real insights into why they make the decisions they do. If readers care about the characters, they become emotionally invested in their actions; they root for them and want them to make decisions that will improve their lives.

One of the main challenges in writing fiction is to create a believable world. That world doesn’t have to mirror the “real” world, but it has to be true to itself. The Unfinished Child is set in the mid-20th century and early-21st century, and I think many readers are surprised to learn about the treatment of people with Down syndrome, both in the past and in the present. Because of this surprise, they want to believe the story really is fiction. And if they find something they don’t like, well, they can respond in a variety of ways—with anger, with apathy, with sadness, with regret, etc. I think that’s one of the roles fiction can play—it can turn a spotlight on the “real” world in compelling ways.

How have people responded to the book? 

I am humbled by the responses I’ve received, especially from people within the Down syndrome community. In truth, I sort of held my breath when I contacted someone at the Canadian Down Syndrome Society and when I reached out to Gail Ford Williamson at Down Syndrome in Arts and Media. I asked them if they would feel comfortable writing a blurb for the book, and when they’d read it and agreed, I was elated. That’s when I knew that maybe I’d hit the right note.

I wanted to write a book with likeable characters and place them in difficult situations. In so doing, I wanted readers to really care about what happens to them. I wanted them to possibly see themselves in the characters as well, and to ask what decision they might make if placed in a similar situation. C.S. Lewis once said, “we read to know that we are not alone.” I think people can read The Unfinished Child and not feel alone. They might feel sad, or angry, but they won’t feel alone.

By far, the most common response I’ve received is that readers cannot put the book down. I love that, because I know the joy in reading a book that I can’t wait to get back to, and as I wrote the novel I kept that in mind. Even if people don’t like the book, I think they’ll have to finish it. I honestly can’t imagine someone not wanting to find out how the book ends.

I’m deeply interested in discussions around the ethics of prenatal testing and reproductive technologies. In many ways, I think the science has progressed so rapidly that we haven’t had the necessary discussions to see whether or not these so-called advancements are improving our lives. I very much hope that my novel might start a discussion about the kind of world we want to live in. Is it a better society if we eradicate difference? Is an easier life a better life? It’s easy to ask questions, and the novel asks a lot of them. I wish it could answer more of them, but at the very least it starts a good conversation.

I underlined many statements in the book, but one particularly stuck out to me: “the more choices we are given the more selfish we become.” Do you agree with the doctor who makes this statement? 

I love the character of Dr. Maclean, and I used him to really muddy the waters in the discussion around prenatal testing. And yes, I do agree with his statement. One of the themes I explore in the novel is whether or not anyone is strong enough to handle what life might present. The idea of “choosing” to opt out of parenting a certain kind of child troubles me, for it assumes so many things. For instance, my children are apparently “healthy” today, but that does not mean they will remain that way. Am I strong enough to handle any adversity that might change one of my children’s lives? Are any of us strong enough for the pain that life will eventually hand out?

One of my favourite speeches in the book is Dr. Maclean’s description of compassion as a muscle that needs to be worked in order to be strong. I think we all believe ourselves to be compassionate people, but then there are “contact moments,” as Dr. Maclean calls them, that ask us to be more compassionate, and those are extremely important. I believe we need those moments, and I worry that they are decreasing now that we have the option to “choose” what children we bring into the world.

I never set out to write a novel that dealt with Down syndrome. Over time, however, Down syndrome figured more largely into the narrative and, in some ways, demanded a larger role. That’s one of the amazing things about writing a novel—you sometimes go places you never expected to go. I feel like this book has been a gift, and I’m grateful to have played a part in its creation.

Share a comment or thought on this post and the ideas contained within it, and you will be entered into a drawing to receive a free e-copy of Theresa Shea’s The Unfinished Child. And spread the word!

Browse Our Archives