by Jodi Picoult
“Were you concerned about the sonogram images being clear?”
“Why would I be?” Charlotte said. “Piper didn’t seem to be, and I assumed that was the whole point of an ultrasound—to get a good picture.”
“Did Dr. Reece advise having a more detailed follow-up ultrasound?”
“No.”
“Did you have any other ultrasounds during your pregnancy?”
“Yes, when I was twenty-seven weeks pregnant. It wasn’t a test as much as a lark—we did it after-hours in her office, to find out the sex of the baby.”
I faced the jury. “Do you remember that ultrasound, Charlotte?”
“Yes,” she said softly. “I’ll never forget it. I was lying on the table, and Piper had the wand on my belly. She was staring at the computer screen. I asked her when I’d get a chance to look, but she didn’t answer. I asked her if she was okay.”
“What was her response?”
Charlotte’s eyes looked across the room and locked with Piper’s. “That she was okay. But that my daughter wasn’t.”
Charlotte
“What are you talking about? What’s the matter?” I’d sat up on my elbows, looking at the screen, trying to make sense of the images as they jostled with my movements.
Piper pointed to a black line that looked to me like all the other black lines on the screen. “She’s got broken bones, Charlotte. A bunch of them.”
I shook my head. How could that be? I had not fallen.
“I’ll call Gianna Del Sol. She’s the head of maternal-fetal medicine at the hospital; she can explain it in more detail—”
“Explain what?” I cried, riding the high wire of panic.
Piper pulled the transducer away from my belly, so that the screen went clear. “If it’s what I think it is—osteogenesis imperfecta—it’s really rare. I’ve only read about it, during medical school. I’ve never seen a patient who has it,” she said. “It affects collagen levels, so that bones break easily.”
“But the baby,” I said. “It’s going to be okay, right?”
This was the part where my best friend embraced me and said, Yes, of course, don’t be silly. This was the part where Piper told me it was the kind of problem that, ten years from now, we’d laugh about at your birthday party. Except Piper didn’t say any of that. “I don’t know,” she admitted. “I honestly don’t know.”
We left my car at Piper’s office and drove back to the house to tell Sean. The whole way, I ran a loop of memory in my mind, trying to think back to when these breaks might have happened—at the restaurant, when I’d dropped that stick of butter and bent down to retrieve it? In Amelia’s room, when I stumbled over a tangled pair of pajama pants? On the highway when I stopped short, so the seat belt tightened against my belly?
I sat at the kitchen table while Piper told Sean what she knew—and what she didn’t. From time to time, I could feel you inside me, rolling a slow tango. I was afraid to touch my hands to my abdomen, and acknowledge you. For seven months we had been a unit—integrated and inseparable—but right now, you felt alien to me. Sometimes in the shower when I did a self–breast exam I had wondered what I would do if I were diagnosed—chemo, radiation, surgery?—and I had decided that I would want the tumor cut out of me right away, that I couldn’t bear sleeping at night and knowing it was growing beneath my skin. You—who had been so precious to me hours ago—suddenly felt that way: unfamiliar, upsetting, other.
After Piper left, Sean became a man of action. “We’ll find the best doctors,” he vowed. “We’ll do whatever it takes.”
But what if there was nothing that could be done?
I watched Sean in his feverish zeal. Me, I was swimming through syrup, viscous and pendulous. I could barely move, much less take charge. You, who had once brought Sean and me so close together, were now the spotlight that illuminated how different we were.
That night, I couldn’t fall asleep. I stared at the ceiling until the red flush from the LED numbers on the clock radio spread like wildfire; I counted backward, from this moment to the one where you were conceived. When Sean got out of bed quietly, I pretended that I was asleep, but that was only because I knew where he was headed: to look up osteogenesis imperfecta on the Internet. I’d thought about doing that, too, but I wasn’t as brave as he was. Or maybe I was less naïve: unlike him, I believed what we learned could actually be worse than what we already knew.
Eventually, I did drift off. I dreamed that my water had broken, that I was having contractions. I tried to roll over to tell Sean, but I couldn’t. I couldn’t move at all. My arms, my legs, my jaw; somehow I knew that I was broken beyond repair. And somehow I knew that whatever had been inside me all these months had liquefied, was soaking into the sheets beneath me, was no longer a baby at all.
• • •
The next day was a whirlwind: from a high-level ultrasound, at which even I could see the breaks, to a meeting with Gianna Del Sol to discuss the findings. She threw out terms that meant nothing at the time: Type II, Type III. Rodding. Macrocephaly. She told us that one other child with OI had been born at this hospital, years earlier, who’d had ten breaks—and who had died within an hour.
Then she sent us to a geneticist, Dr. Bowles. “So,” he said, getting right down to business—no I’m so sorry you had to hear this news. “The best-case scenario here,” he said, “would be a baby that survives the birth, but even if that’s the case, a Type III might have cerebral hemorrhage caused by birth trauma or an increased circumference of the head compared to the rest of the body. She will most likely develop severe scoliosis, have surgeries for multiple broken bones, need rodding in her spine, or vertebrae fused together. The shape of her rib cage won’t allow her lungs to grow, which can lead to repeated respiratory infections, or even death.”
Amazingly, this was a whole different run of symptoms from the ones Dr. Del Sol had given us already.
“And of course, we’re talking hundreds of broken bones, and realistically a very good chance she’ll never walk. Basically,” the geneticist said, “what you’re looking at is a lifetime, however short, of pain.”
I could feel Sean next to me, coiled like a cobra, ready to take out his own anger and grief on this man, who was talking to us as if it were not you, our daughter, who was the subject but a car whose oil we needed to change.
Dr. Bowles looked at his watch. “Any questions?”
“Yes,” I said. “Why didn’t anyone tell us before?”
I thought of all the blood tests I’d taken, the earlier ultrasound. Surely if my baby was going to be this sick—this hurt for her whole life—something would have shown up earlier?
“Well,” said the geneticist, “neither you nor your husband is a genetic carrier of OI, so it wouldn’t have been routinely tested for prior to conception, or flagged by the obstetrician as something to keep an eye on. It’s good news, actually, that the disease was a spontaneous mutation.”
My baby is a mutant, I thought. Six eyes. Antennae. Take me to your leader.
“If you have another child, there’s no reason to believe this will happen again,” he said.
Sean came out of his seat, but I put a hand on his arm to restrain him.
“How do we know whether the baby will . . .” I couldn’t say it. I lowered my eyes, so that he knew what I meant. “. . . at birth, or live longer?”
“It’s very difficult to tell at this point,” Dr. Bowles said. “We’ll schedule repeated ultrasounds, of course, but sometimes a parent whose child has a lethal prognosis will end up with a baby that survives, or vice versa.” He hesitated. “There is another option—several places in this country will terminate a pregnancy for maternal or fetal medical reasons, even this far along.”
I watched Sean fit his teeth around the word he did not want to say out loud. “We don’t want an abortion.”
The geneticist nodded.
“How?” I asked.
Sean stared at me, horrified. “Charlotte, do you know
about those things? I’ve seen pictures—”
“There are many different methods,” Bowles answered, looking directly at me. “Intact D and E is one, but so is induction after stopping the fetus’s heart.”
“Fetus?” Sean said, exploding. “That’s not a fetus. That’s my daughter we’re talking about.”
“If termination isn’t an option—”
“Option? Fuck that. It should never even have been on the table,” Sean said. He reached for me, pulling me to my feet. “Do you think Stephen Hawking’s mother had to listen to this load of bullshit?”
My heart was hammering and I could not catch my breath. I didn’t know where Sean was taking me, and I didn’t particularly care. I just knew that I couldn’t listen to that doctor for one more moment, talking about your life or lack thereof as if it were a textbook he was reading on the Holocaust, the Inquisition, Darfur: truths that were so awful and graphic that you instead skipped over them, conceding their horror without suffering the details.
Sean dragged me down the hallway and into an elevator that was just closing. “I’m sorry,” he said, leaning against the wall. “I just . . . I couldn’t.”
We were not alone inside. To my right was a woman about ten years older than I was, pushing one of those state-of-the-art wheelchairs with a child sprawled across it. This one was a boy in his teens, thin and angular, his head supported by a brace on the back of the chair. His elbows twisted, so that his arms were flailed outward; his glasses were askew on the bridge of his nose. His mouth was open, and his tongue—thick and jellied—filled the bowl of his mouth. “Aaaaah,” the boy sang. “Aaaaah!”
His mother touched her hand to his cheek. “Yes, that’s right.”
I wondered if she really understood what he was trying to say. Was there a language of loss? Did everyone who suffered speak a different dialect?
I found myself staring at the woman’s fingers, stroking her son’s hair. Did this boy know his mother’s touch? Did he smile at her? Would he ever say her name?
Would you?
Sean reached for my hand and squeezed it tightly. “We can do this,” he whispered. “We can do it together.”
I didn’t speak until the elevator stopped at floor three and the woman pushed her son’s wheelchair off into the hallway. The doors sealed shut again, isolating Sean and me in a vacuum. “Okay,” I said.
• • •
“Tell us about Willow’s birth,” Marin said, pulling me back to the present.
“She was early. Dr. Del Sol had scheduled a C-section, but instead, I went into labor and everything happened very quickly. When she was born, she was screaming, and they took her away from me to X-ray her, to do tests. It was hours before I saw Willow, and when I did, she was lying on a foam pad in a bassinet, with bandages wrapped around her arms and legs. She had seven healing fractures and four new breaks caused by the birth.”
“Did anything else happen in the hospital?”
“Yes, Willow broke a rib, and it pierced her lung. It was . . . it was the most frightening thing I’ve ever seen in my life. She went blue, and suddenly there were dozens of doctors in the room and they started doing CPR and stuck a needle in between her ribs. They told me her chest cavity had filled with air, which made her heart and trachea shift to the wrong side of her body, and then her heart had stopped beating. They did chest compressions—breaking even more of her ribs—and put in a chest tube to make the organs go back where they belonged. They cut her,” I said. “While I watched.”
“Did you talk to the defendant afterward?” Marin asked.
I nodded. “Another doctor told me that Willow had been without oxygen for a while, and that we wouldn’t know if there would be brain damage. He suggested that I sign a DNR form.”
“What’s that?”
“It means do not resuscitate. If anything like this happened to Willow again, the doctors wouldn’t intervene. They’d let Willow die.” I looked into my lap. “I asked Piper for advice.”
“Because she was your physician?”
“No,” I said. “Because she was my friend.”
Piper
I had failed.
That’s what I thought, when I looked down at you, battered and buttressed, a fountain of a chest tube blooming out from beneath your fifth rib on the left side. I had been asked by my best friend to help her conceive, and this was the outcome. After the wrenching question about whether or not you belonged in this world, it seemed that you were giving Charlotte your own answer. Without saying a word, I walked up to Charlotte, who was staring down at you as you slept, as if glancing away for even a moment might give you incentive to code again.
I had read your chart. The fractured rib had caused an expanding pneumothorax, a mediastinal shift, and cardiopulmonary arrest. The resultant intervention had caused nine further fractures. The chest tube had been inserted through the fascia and into the pleural space of your chest, sutured into place. You looked like a battlefield; the war had been fought on the broken ground of your tiny body.
Without saying a word, I walked up to Charlotte and reached for her hand. “Are you okay?” I asked.
“I’m not the one you need to worry about,” she replied. Her eyes were red-rimmed; her hospital robe askew. “They asked if we wanted to sign a DNR.”
“Who asked that?” I had never heard of anything so stupid. Not even Terri Schiavo had been made DNR until tests indicated severe, irreversible brain damage. It was hard enough to get a pediatrician to be hands off when dealing with a severely preterm fetus with a high probability of death or lifetime morbidity—to suggest a DNR for a neonate on whom they’d just done the full-court press in terms of a code seemed improbable and impossible.
“Dr. Rhodes—”
“He’s a resident,” I said, because that explained everything. Rhodes barely knew how to tie his shoes, much less talk to a parent who’d been through an intense trauma with a child. Rhodes should never have brought up the DNR to Charlotte and Sean—particularly since Willow hadn’t yet been tested to see if she was mens sana. In fact, while he was ordering that test, he might have wanted to get one for himself.
“They cut her open in front of me. I heard her ribs break when they . . . when they . . .” Charlotte’s face was white, haunted. “Would you sign one?” she whispered.
• • •
She had asked me the same question, in not so many words, before you were even born. It was the day after her twenty-seven-week ultrasound, when I had sent her to Gianna Del Sol and the health-care team for high-risk pregnancies at the hospital. I was a good obstetrician, but I knew my limits—and I couldn’t provide her with the care she now needed. However, Charlotte had been traumatized by a stupid geneticist whose bedside manner was better suited to patients already in the morgue, and now I was doing damage control while she sobbed on my couch.
“I don’t want her to suffer,” Charlotte said.
I did not know how to tiptoe around the topic of a late-term abortion. Even someone who wasn’t Catholic, like Charlotte, would have a hard time swallowing that option—and yet, it was never chosen lightly. Intact D & Es were performed only by a handful of physicians in the country, physicians who were highly skilled and committed to ending pregnancies where there was a great maternal or fetal health risk. For certain conditions that weren’t apparent before the twelve-week cutoff for abortions, these doctors provided an alternative to giving birth to a baby with no chance of survival. You could argue that either outcome would leave a scar on the parent, but then again, as Charlotte had pointed out, there were no happy endings here.
“I don’t want you to suffer,” I replied.
“Sean doesn’t want to do it.”
“Sean isn’t pregnant.”
Charlotte turned away. “How do you fly across the country with a baby inside you, knowing you’ll be coming back without one?”
“If it’s what you want, I’ll go with you.”
“I don’t know,” she sobbed. “I don�
��t know what I want.” She looked up at me. “What would you do?”
• • •
Two months later, we stood on opposite sides of your hospital NICU bassinet. The room, filled with so many machines to keep their tiny charges alive and functional, was bathed in a rich blue light, as if we were all swimming underwater. “Would you sign one?” Charlotte asked me again, when I didn’t answer the first time.
You could argue that it was less traumatizing to terminate a pregnancy than it was to sign a DNR for a child who was already in this world. Had Charlotte made the decision to terminate at twenty-seven weeks, her loss would have been devastating but theoretical—she would not have met you yet. Now, she was forced to question your existence again—but this time, she could see the pain and suffering in front of her eyes.
Charlotte had come to me for advice multiple times: about conceiving, about whether or not to have a late-term abortion, and now, about a do not resuscitate order.
What would I do?
I would go back to the moment Charlotte had asked me to help her have a baby, and I’d refer her to someone else.
I’d go back to when we were more likely to laugh together than to cry.
I’d go back to the time before you had come between us.
I’d do whatever I had to, to keep you from feeling like everything was breaking apart.
If you chose to stop a loved one’s suffering—either before it began or during the process—was that murder, or mercy?
“Yes,” I whispered. “I would.”
Marin
“The learning curve was huge,” Charlotte said. “From figuring out how to hold Willow, or how to change her diaper without breaking a bone, to knowing that we might simply be carrying her in our arms and hear that little pop that meant she’d broken something. We found out where to order car beds and adapted infant carriers, so that the straps wouldn’t snap her collarbones. We started to understand when we had to go to the emergency room and when we could splint the break ourselves. We stocked our own waterproof casts in the garage. We traveled to Nebraska, because they had orthopedic surgeons who specialized in OI, and we started Willow on a course of pamidronate infusions at Children’s Hospital in Boston.”
