Compatible with Life

You get used to watching them hurt your daughter.

You don’t consider yourself macho. You took poetry classes in college and got to hear all about your female friends’ breakups; they shared because you were “safe” and “sweet” and “nice.” But you know what you’re supposed to do to people who hurt your daughter: you’re supposed to hurt them back. It doesn’t matter if it’s a five-foot-tall Asian woman in a white lab coat. It doesn’t matter if it’s a heavy black nurse in teddy bear scrubs. Your job is to protect Ella — but you can’t.
Sarah, your wife, always prided herself on her scrappiness, her bravado. In college, she argued with professors and spent spring break building houses in Haiti. She still has those pictures of herself, sunburned and grinning, her face streaked with mud. The first indication you have that things are changing: during Sarah’s first trimester of pregnancy, one day when the two of you are crossing the street by your apartment, she takes your arm. Not in a friendly, joking way — she is nauseated, her skin yellowish, with sour breath and circles under her eyes. She leans on you, and you’re startled.

After finding out the baby’s coming, you work harder at your job, mess around on the internet less, out of some vague need to provide. You take the morning off to go with Sarah to the 20-week ultrasound. The windowless radiology department is in the hospital’s basement. You hold Sarah’s hand and look up at the monitor. As the blonde tech moves the transducer across your wife’s belly, she tries to keep her face neutral — she frowns and then smoothes her face and then frowns again. In her scrubs, she seems so young and wholesome. She clicks the keyboard and freezes each picture for a moment, before the grainy being on the screen swims into motion again. The tech takes a lot of pictures of the heart. “It’s a girl,” she says, but she doesn’t smile.

After she goes out, a paunchy doctor enters and recommends an echocardiogram. “It will tell you if what we’re seeing with the heart is indeed a problem,” he says, blinking. “Then a cardiologist can recommend the best course of action.”

You had both been planning on going out to lunch after, to celebrate, but once you leave the hospital and find yourself dazed on the city sidewalks, neither of you wants to eat. “I’m just going back to work,” Sarah says, and you nod. You hope she finds comfort in her gray desk at the PR firm, where she can ease into projects and emails and try not to think about the images of the tiny heart clenching and unclenching.

Two days later, Sarah again lies down and exposes the mound of her belly while you watch the screen and hold her hand. The doctor says “Hmmm” several times, and you scan his face for clues. He doesn’t explain anything until both of you are seated in his office. He has a gray beard, and gold-rimmed glasses, and he folds his hands on his desk. He tells you: “The lower left chamber of the heart is not developed properly. It’s called hypoplastic left heart syndrome, and it’s generally not compatible with life.” Sarah makes a strangled sound deep in her throat. She digs her fingernails into your palm.

The doctor explains your options. Termination, or a series of three complex surgeries: at birth, four to six months, and 18 months. He adds, “Children who survive all three surgeries can live completely normal lives.”

On the way home, you start and stop in rush hour traffic along City Line Avenue. The doctor spoke of termination, so that’s how you refer to it to Sarah.

“What are you talking about?” Sarah puts one arm across her stomach as though she is protecting the baby from you. “She’s going to be born. We’re going to do everything we can.” You look sideways at her, and then swerve to avoid a pothole. Her animalistic loyalty to the life inside her surprises you. Curled towards the door, she seems incapable of rational discussion. You drive home the rest of the way in silence.

For you, everything we can means you sit in a cubicle nine hours a day, earning money and benefits that will enable people to hurt — and maybe help — your wife and daughter. This is what it means to be a man. There is no one to hit, nothing to kill, nothing to run towards or away from. Late into the night, you read medical sites on the internet and try to convince yourself that you’re doing something. The index finger on your mouse hand starts to ache.

~

You are there when they cut Sarah open, and from behind the screen you see the baby lifted up. Nurses clean the baby. You glimpse a red wrinkled face before the cardiac team spirits her away to intensive care.

Hospitals are no place for well people. After the Caesarean, as your wife lies in the bed, her belly deflating, you sit with her and feel the emptiness. A line of metal staples holds her stomach together. You look out the window: treetops and gray sky.

If you didn’t know better, you might think you had lost the baby. On another floor of the hospital, a ventilator helps your daughter breathe. You were there when they cut your wife open, but you won’t see them cut your daughter open. Your daughter — a tiny creature you don’t even know yet, with pale fuzzy hair. Within a day, the Norwood procedure will reconstruct Ella’s right ventricle to compensate for the defective one on the left. You sit with your sleeping wife, and you wait.

~

When Ella comes home after a week, you are told to treat her normally, but you have no idea what that means. You change her diaper in the middle of the night and she screams with rage. One day you are holding her and singing a silly song, and she smiles.

At four months, you go to the hospital for the second surgery. It’s harder this time, because now you know Ella, you know what you might lose. She trusts you and Sarah to keep her safe. In the hospital, you change her into the regulation cotton peach pajamas. When the nurse comes in, Sarah braces herself and exposes your child’s forearm as an offering. The nurse jabs and jabs. Ella’s face contorts into screams. “It’s okay, Ella-bella,” Sarah murmurs.

You’re supposed to hurt that nurse, knock her to the floor, grab your daughter, and run out of the building. Instead you silence your primate brain and clench your jaw as they wheel Ella from the room.

As you sit and drink coffee from the hospital cafeteria, and Sarah knits and drops stitches and tries to fix them, you think that this is not your story. You are the observer. You look at the gray-blue walls and wonder if the surgeon, Dr. Rankowski, goes home and feels satisfied about all the lives he’s saved. You wonder if there are things he can’t do for his family — change the oil in the car, for example. Maybe he can’t even make toast without burning it. Maybe he’s a bad driver and drives drunk sometimes. He must have weaknesses to counterbalance his powers. Outside the half-open door, you hear echoes and whispers as people flit down the hallway.

Hours later, nurses wheel Ella back. Dr. Rankowski strides in, a paper cap on his head and his surgical mask pushed down around his neck. He tells you: complete success. You shake his hand and look at your baby, her eyes lolling groggily from the anesthetic. Sarah grins and grins, and her hands shake. Like a person in a fairy tale who has promised away a first-born, you try not to think about what’s coming in a year: the third procedure. You lift Ella gently up.

The next afternoon, when you take Ella out to the car, the three of you walk across the parking lot in the slanting evening light. You take a deep breath and start to believe that this — your family — might last. You look at Ella’s flushed face against Sarah’s shoulder and imagine a young woman saying, I was born with a heart defect, but now I’m fine. This not your story, but someday it may be hers.