by Lisa Tucker
“I’m sorry,” Ben said. “I don’t think you’re old, but from a medical point of view, you’re considered an elderly prima gravida .”
Amelia knew prima gravida was a first-time pregnant woman, but elderly? “Great,” she said. “Thanks for sharing.” She knew how snotty she sounded, but this test had made her feel like her body was not only old but defective, like it couldn’t even protect her baby. “I don’t care what doctors call it. I know a lot of women my age who had babies and everything was fine.”
“That doesn’t tell us anything about the risk. People you know can’t be considered a representative sample. The plural of anecdote is not data.” He sat up straighter and started thumping his foot against the couch leg. “Before the test, the risk was already high based only on your age. Recent research suggests that the father’s age also increases the risk. Taking into account the figures you gave me for the serum test, the free beta-hCG and PAPP-A, and also—”
“Just tell me what they mean by ‘high risk.’ In English.”
“The estimated chance is one in twenty-three.”
She swallowed. “That’s not so bad. Twenty-two babies will be healthy for every one who has Down syndrome. I’ll just have to believe that mine is one of the healthy ones.”
“And we’ll know soon enough from the CVS. Nothing to worry about yet.”
CVS was chorionic villus sampling. Amelia had agreed to have the test because Ben had told her, weeks ago, that it was “essential.” It was scheduled for the day after Christmas, but she still wasn’t sure she could go through with it. Originally she’d been happy about this blood screen, thinking that when it turned out to be normal Ben might agree that she could skip the test. It was such an invasive procedure; the doctor actually stuck a needle into the placenta. She’d even read about so-called limb-reduction defects—the baby losing a finger or toe. Ben said that was very rare, especially if the doctor was experienced, and her OB was sending her to one of the best specialists in the country. The risk of miscarriage was also overstated, according to Ben, but she didn’t see how she could take that lightly if he was right that her chance for a miscarriage was already high.
“I’ve been thinking about the CVS,” she said. “I know we want our baby to be healthy, but we could do an ultrasound first. Then, if—”
He shook his head. “An ultrasound can only show markers for Down. It’s not definitive.”
Amelia had read about these markers on the web. They were things like a missing bone in the nose or unusually thick skin at the back of the neck. Lots of others, including the one that had made her cry when she read about it: a bright spot on the heart. It sounded like something beautiful; maybe that’s why it seemed so sad, thinking of the babies who had those bright spots on their tiny hearts.
“At this point,” Ben said, “the only way to be absolutely sure is to do the CVS now or an amnio at sixteen weeks.” He paused. “I’m sure you don’t want to wait to find out if the fetus is healthy.”
“No,” she said, though the truth was more complicated. She felt like she couldn’t wait five minutes to hear that her baby was all right, but she might never be ready to hear the other answer, that it wasn’t.
When she woke up the next morning she told Ben she’d had a dream about the two of them in the park with a toddler. “And it was a beautiful spring day. Maybe it’s a sign that everything will work out.”
Ben didn’t like listening to dreams, but he would if she kept it short. This time, she wished she hadn’t bothered because his response was so deflating. “It’s a sign that you’re thinking positively. That’s good, even if it can’t influence the outcome.”
“How do you know it can’t be a real sign?”
He looked confused. “Are you serious?”
Was she? She was hardly a mystical person, and yet being pregnant made her feel that she was connected to something bigger than herself. A universal life force? A benevolent being? God?
When she didn’t answer, he said, “I’m glad you’re keeping your spirits up. I’ll be home around seven. We can have dinner together.”
He’d promised to work fewer hours; it was part of their agreement when he asked her to come back from New York. So far he was keeping his promise, though their time together was still strained. Sometimes she thought he was a different person now that he worked at the lab. Or she was different from being pregnant. Or (her secret fear) that she’d never known him that well to begin with. But at least he was trying. He’d even stopped calling the baby a fetus—though she noticed that he’d reverted again last night, but maybe that was understandable. Maybe he was trying to keep himself from being heartbroken if the worst happened.
Since it was two days before Christmas, she had no choice; she had to finish her shopping. She went to the gigantic mall in the suburbs, which was mobbed of course. By the time she got home it was after seven. Ben was having a glass of wine and talking on the phone to Natalie, an old friend of his from Boston. They’d never been romantically involved, and Amelia wasn’t jealous; she actually thought it was a good sign. He used to talk to Natalie a lot when he was traveling for the foundation, but he was always too busy since they’d been in Philadelphia. Maybe he was starting to relax into the work at the lab.
On her way home from the mall she’d picked up a broiled chicken and pasta from Trader Joe’s, but she didn’t want to start eating without him. She put the food in the refrigerator and threw together a half-sandwich of ham and Swiss, just to tide her over. Her OB had said she could eat whenever she was hungry, and since she was always hungry, this was great news.
Amelia was sucking mustard off her fingertip when she heard Ben say, “She’s not Catholic. I think she said her parents were Unitarians. She doesn’t even believe in God, as far as I know.”
Normally she made a point of leaving the room whenever Ben was talking to anyone, to give him his privacy. But this was different. He was talking about her.
“I’ve decided I do believe in something,” Amelia said loudly. “I think of it as Universal Benevolence.”
He nodded in her direction. Good; he knew she was listening. Now she could eavesdrop as much as she liked.
“I think you’re right,” Ben said to Natalie. “We have to discuss what I want, too.”
Amelia took her sandwich and sat down at the kitchen table—her beautiful blue tile table, which she’d found in Mexico; it was so comforting to have her own things after far too long living in hotels. Ben was in the den, which was connected to the kitchen. He was on the floor, leaning against her walnut file cabinet. “I’ve never told her how I felt about that,” he said. “Don’t you think it’s too late now?”
“No,” Amelia said. “It’s never too late.” Then, for some reason, she giggled. The sandwich tasted so good, and she knew she wouldn’t throw up. Maybe that was all it took for her to be happy, as long as she didn’t think about that test.
“Hey, babe,” Ben said, turning around. “I didn’t know you were back.”
He sounded sincere—and embarrassed. He was even blushing.
She finished the sandwich, but her happiness evaporated. She went into the bedroom and took off her tight jeans and put on her sweatpants. When Ben got off the phone, she was lying on the bed, curled up in a ball, thinking.
A half hour later they were sitting in the kitchen, eating chicken and pasta, when he said, “I need to ask you something.”
“So I gathered,” Amelia said coolly.
“Are you pro-choice?”
“Of course.” She stared at him. “Why?”
He didn’t say anything.
She put down her fork. “Do you want to ask if I’m a Democrat, too?”
“No,” he said. He swallowed a bite of his chicken. “I’m sorry I brought it up.”
“Brought what up?”
“Nothing.” He was staring at his plate.
She waited for several minutes, finishing her pasta. Finally, she said, “Do you want to talk about what we s
hould do if our baby has Down syndrome? Is that what you’re hinting at?”
Ben exhaled. “I don’t want to hurt your feelings, but yes. I do want to talk about what we’ll do if the fetus has an abnormality.” He grew quiet, but his foot was banging a nervous rhythm on the table leg. “I don’t think I can handle that.”
She paused. “Me either.”
“That’s great,” he said. “Now you can see why I’m glad you’re doing the CVS test after Christmas.”
“Because if it does have Down syndrome, you want me to get an abortion?”
“Yes.” His voice was grateful. “That’s what I want. And I’m so relieved to hear that you feel the same way.”
She nodded, but it hit her what this would mean. She would not have her baby anymore. She would probably never be a mother.
The next day, Christmas Eve, Ben biked to the lab in the morning to do a little work, but Amelia couldn’t concentrate. She kept thinking about those babies with the bright spots on their hearts. Some of them would go on to be diagnosed as perfectly normal, usually through amniocentesis, but those that weren’t would probably be aborted. The abortion rate for babies with Down syndrome was something like 90 percent—assuming their parents used the available genetic tests. It was obviously a bioethics issue, and Amelia wondered why she’d never really thought about it before. She read message boards and blogs where parents of Down kids called this a clear case of eugenics. Their passionate voices speaking out for their children’s rights moved her. The pictures of the children—so beautiful in a wispy, otherworldly way—haunted and confused her.
When Ben got home she was determined not to discuss this, afraid she’d spoil the evening. She’d bought a red silk blouse to wear for their first Christmas Eve together, and she was hurt when he didn’t say a word about the blouse or how she looked in it. She was finally gaining weight; maybe she was ugly to him now? They hadn’t had sex once since they’d moved into this house. Was she defective to him, too?
Of course she didn’t bring up the test on Christmas Day, either, at least not while they were in Connecticut. But that night, when she and Ben were back home, sitting in their new living room, she asked him to tell her everything that could go wrong with a Down syndrome child. He had a long list: from heart problems to epilepsy, from sleep apnea to blood disorders. He must have thought he was helping her remember that she was making the right decision about having the CVS.
She was sitting on her favorite green chair with the overstuffed cushions: wide enough for two, snuggly enough for one with a blanket and a book. She thought for a moment, then she asked Ben if he’d ever considered that Down syndrome could someday be accepted as a variation in nature. “I remember the day after Thanksgiving, when you and Matthew were talking about the CNV breakthrough. You told Matthew that copy number variation would change the way we look at normal. You said it could change genetic testing, too.”
“I was talking about Uniparental Disomy. When a child gets two copies of a chromosome from one parent and none from the other. We don’t know the full effects of this yet, but we do know Trisomy 21. The condition has been in the literature since 1866, when John Langdon Down identified it.”
“Are you sure there’s nothing we can learn from people with Down syndrome?”
“I wouldn’t say that.” He looked at her. “I think we may be able to cure it someday.”
“I mean the people themselves. The ones who are living with the disorder.”
“I’m sure they have something to teach us about patience and kindness. They can help our compassion evolve.”
“But they don’t deserve to live, you’re sure about that?”
“Of course not.” He finally put his journal down. “How can you even think I’d believe something so inhumane? I only want the abortion because I know I can’t take care of a child with significant health problems.”
She curled up tighter into her chair. “But what if I can’t bring myself to do it?”
“What do you mean?” His voice was cracking the way it did when he was really upset. He turned around and looked at her. “I thought we already settled this.”
“I want to see it the way you do…but I—”
He shook his head. “It’s your choice. I know that. I won’t abandon you whatever you decide.”
Amelia knew why he used the word abandon —because he always said his own father abandoned the family after the divorce. But still, it seemed odd the way he said this, though she forced herself not to be nervous and just listen to him.
“I feel so overwhelmed.” His voice was miserable. He was running his hand through his hair. “I don’t understand how we ended up here.”
“It’s nothing we did,” she said gently. “You told me that the risk for Down syndrome is statistical, no one’s fault, nothing that could be done to—”
“No, I mean I don’t understand how we got into a position where we have to worry about this.” He stood up and walked over to the bookshelves. He was silent for a minute. “Everyone who knows me knows I never wanted children. But apparently, you didn’t know that. I can’t fathom why we never had that conversation.”
“Well, it’s too late to have it now.” She hoped she didn’t sound as hysterical as she felt. “Obviously.”
“I’m not blaming you. I know I shouldn’t have assumed you were using birth control.” He sighed and looked at his hands. “Ever since Matt told me that you always wanted to be a mother, I’ve been trying to adjust, but the last few days have—”
“Matthew told you that?” It was the least important of everything Ben was saying here, and so the easiest to focus on. “When?”
“In Paris, when I told him you were pregnant. He knew how I felt about having children, but he said I would have to change. He said he understood how hard it was because he was going to have to change himself, too, now that he was starting a family. At the time, I felt like he really did understand, though of course later he admitted he’d made it up. I was surprised, but I shouldn’t have been. Matt has never been above lying if he thinks the ends justify the means.”
“I thought he lied because he was jealous.”
“Where did you get that idea?”
She flashed to the day after Thanksgiving, standing out on the sidewalk with Matthew, but she said, “You told me yourself that he was still in love with me. Supposedly.”
“He is. That’s why he was desperate to convince me to change, even if he had to lie to do it. He wants you to be happy. In the last month, he’s told me a dozen times that I have to step up to my responsibility now that you’re pregnant and marry you. ‘She loves you,’ Matt keeps saying. ‘She’s having your kid. You’re a lucky guy, and you’re acting like a jackass.’”
Amelia was speechless. Matthew had told that lie about starting a family for her sake?
Ben was still talking. “I want you to be happy, too, but I’m not sure I can change how I feel.” He closed his eyes for a second. “Even if the CVS shows no genetic abnormalities, what if the child is born with another illness, one we don’t have a test for yet? What if it develops autism? What if it’s in an accident and ends up paralyzed? What if it gets leukemia?”
“I think every parent worries about these things. But you tell yourself that if something terrible happens, you’ll—”
“What? Dedicate my life to taking care of it? Give up everything else—my lab, my commitment to the world’s poor—for one child?”
“You could still work.”
“But the child would have to come first, and the work would suffer. My life’s work.” He went back to his chair and sat, thumping his feet, messing with his hair.
“What choice do we have?”
“It’s not really ‘we,’ Amelia. If you didn’t want to be a mother, you’d have a choice. But if I don’t want to be a father, I don’t.”
She didn’t know what to say to that. After a few minutes, she stood up and went into the bedroom. She felt like such a fool, moving to thi
s lovely house, unpacking all her things, spending so much time daydreaming in the nursery. Dreaming of a family with him.
The next morning she couldn’t bring herself to have the CVS test and risk a miscarriage. She was watching an Adam Sandler movie when Ben came home. It was dark outside, and windy. The branches of a tree were slapping against the back bedroom window.
When she told him that she didn’t have the test, he sighed but he didn’t say anything. “I don’t think our baby has Down syndrome,” she said. “I have a feeling that everything is going to be fine.”
“But you can’t know that.”
“No, I can’t. And it’s not the only issue anymore, is it?”
He looked in the direction of the window, and so did she. It faced their little yard. Amelia wanted to plant flowers there. Ben thought it would be a great place to put a barbecue grill. She’d imagined standing at that window, watching Ben and their son or daughter playing catch. It was a silly daydream, since Ben had never liked sports. He rode his bike to work only because he believed exercising was important for mental clarity, and he was opposed to driving unless he had to because it was bad for the environment.
“You do have a choice,” she finally said. “You can leave me.” She paused. “When the child is born, you can see him or her whenever you want, as much as you want, or not at all. That’s your choice, too. But you can’t stay and not be happy about this pregnancy. I don’t want to live with you like that. That’s my choice.”
He walked out of the room and Amelia forced herself to concentrate on the movie. She’d seen it several times, but each time she was struck again by how good it was. Yes, it fit the classic romantic-comedy formula that “love conquers all,” but the all in this case wasn’t a misunderstanding or a nutty relative; it was a brain injury. Even more impressive, the brain injury was permanent. Adam Sandler and Drew Barrymore had to figure out how to live together in a world that was inherently unpredictable. Nothing was guaranteed in life, and Amelia was trying to make her peace with that, but it was so hard.
