My last meal, its cheerful yellow wrapper, thunked to the bottom of the vending machine.
I have to stop eating out of machines at some point, I thought.
I tore the package open, popping a few peanut M&Ms in my mouth. When I turned around, the two doctors were waiting for me—the neonatologist, with long blond hair and cool eyes, and the resident, dark-haired, wide-eyed, slightly trailing, in training.
They wanted to speak with me. They wanted to speak with my husband and me. They wanted to talk to us about our daughter.
I was anxious, mildly irritated, at the thought of putting away my candy, waiting twenty minutes to eat.
The two doctors sat on the sofa facing us. They glanced at each other. The blond neonatologist spoke.
“Your daughter Amira’s ultrasound came back,” she said, her voice calm and controlled. “It shows she’s had an intraventricular hemorrhage. Probably within the first couple of days of being born.”
My daughter was seven days old.
My daughter was one pound, fifteen ounces, pink, warm, covered in wires, intubated, incubated, and perfect.
I had just seen her. I had just pulled on latex gloves and reached through two holes in fiberglass to touch her, not fifteen minutes before.
No. I thought. I took steroids.
We had been told of the risk for intraventricular hemorrhages. More than 60 percent of infants with birth weights under 1000 grams (2.2 pounds) have them; they’re a major cause of death and disability in premature babies. We had also been told this: We were lucky—so, so lucky. We knew the babies were going to be delivered prematurely. That gave me time to take a course of steroids. The steroids would help to develop the cellular structure of the brain, make it stronger, more resistant to damage.
The doctor explained the different grades of bleeds.
Grade I: bleeding near ventricle.
Grade II: blood in ventricle.
Grade III: enlarged ventricle.
Grade IV: burst ventricle, blood seeping into surrounding brain tissue.
Ours, she reported, was a Grade IV.
“Babies with these types of bleeds are usually significantly disabled. 90 to 95 percent of them have cerebral palsy, hearing loss, vision problems, cognitive disabilities…”
I saw a flash, a thirty-year-old clip of television, a telethon—mangled hands, bent back, dangling withered legs, mouth open, wet, slack, slurred, unintelligible speech. This is my daughter.
And then I started screaming.
“But my daughter!” Scream scream scream. “But my daughter!” Scream scream scream. “But my—!”
But my daughter—what?
BUT MY DAUGHTER CAN’T BE DISABLED, BECAUSE I DON’T HAVE A DISABLED DAUGHTER.
As I screamed, I moved outside of myself, listened to my out-of-body screams, commented on my out-of-body screaming.
It’s so unlike me to scream like this, in front of strangers. I just keep screaming. I can’t stop. I guess people, if I tell them, will say, “Well, I can believe it. She deserved to scream. Who wouldn’t scream in that situation?”
The doctors seemed far away, the air in front of them, hot and wavy, like their sofa had been transported to a distant black highway in the desert.
“I’m required to tell you,” the doctor said. “In the case of a Grade IV bleed, it’s your legal right to remove your daughter from the ventilator.”
I stopped screaming.
When I replay this scene, sometimes I transform into a fierce coyote mother. I flip over the coffee table in a rage, and I yell, “I would never take my child off a respirator! How dare you?!”
In reality, I shrugged. That was my coyote move. Shrugging. Glancing at David. Asking: “People actually do that?”
“Some people,” answered the doctor, quietly.
“How many people?” I asked. “Like what percent of people?”
“I would say at least 80 percent don’t do it.”
I looked into the doctor’s face. She was young, attractive, serious. She seemed driven, distant. I doubted she had kids. But I asked her anyway.
“If she were your daughter, what would you do?”
She looked at me for a second, maybe three seconds.
“I wouldn’t do it if she were my baby.”
“You?” I asked the resident.
He looked at the neonatologist. He shifted in his seat. He mentioned being on rotation. OB/GYN wasn’t his specialty.
“I don’t think I would do it,” he said, finally.
I looked at my husband. He shook his head. “It’s not even an option. We already love her.”
“I know,” I said. My voice sounded far away, its tone inscrutable.
“She’s already here,” he said.
Less than three hours later, the same doctors came into the parents’ lounge. I was not eating this time. I could not be interrupted, mildly irritated.
The doctors wanted to speak with me. They wanted to speak with my husband and me. They wanted to speak with us about our daughter, our other daughter.
We walked down the same long hallway. We entered the same spare, low-lit room.
“Your daughter Zara’s ultrasound came back,” the doctor said, her voice still calm, still controlled. “It shows she’s had an intraventricular hemorrhage.”
My daughter was seven days old.
My daughter was one pound, fourteen ounces, pink, warm, covered in wires, intubated, incubated, and perfect.
“A Grade IV?” I asked.
I’m ready, I thought. Say it. A Grade IV.
“A Grade III,” the doctor said. “On each side.”
Chance of disability for a bilateral Grade III bleed: 15–30 percent.
“We could remove her from the ventilator, too?” I asked. “Legally speaking?”
I didn’t want to remove her. I wouldn’t have removed her. Especially now that the risk seemed, comparatively speaking, miniscule. I just wanted to know—I was driven to know—if I were someone else, but Zara were still mine, could I remove her? Could I decide the risk was too much for me to bear and remove it?
(Legally, no.)
That night we left the hospital to go home, walking silently until we reached the car, parked on Huron.
“It has a flat,” David said.
I sat in the front seat and called my dad. I cried. He cried.
“I don’t even know her,” I said. “I’ve known her a week. Why does it matter, any more than it would matter to anyone if a child died?”
Through the front windshield, I watched David change the tire. It took a lifetime. It was snowing badly. He guarded his eyes with one hand so he could see what he was doing. What was he doing?
It was not snowing, could not have been snowing, though it always snows in this story. It was October 20th.
***
First image by Jen Ren.
