Handle With Care (44 page)

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 wife 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.”

“Do you ever—well, for lack of a better term—get a break?”

Charlotte smiled a little. “Not really. We don’t make plans. We don’t bother, because we never know what’s going to happen. There’s always a new trauma we have to learn to deal with. Breaking a rib, for example, isn’t like breaking your back.” She hesitated. “Willow did that last year.”

Someone in the jury sucked in their breath, a whistling sound that made Guy Booker roll his eyes and that absolutely delighted me. “Can you tell the court how you’ve managed to pay for all this?”

“That’s a huge problem,” Charlotte said. “I used to work, but after Willow was born, I couldn’t. Even when she was in preschool, I had to be ready to run if she had a break, and you can’t do that when you’re the head pastry chef at a restaurant. We tried to hire a nurse that we trusted to take care of her, but it cost more than my salary, and sometimes the agency would send along women who knew noth
ing about OI, who didn’t speak English, who couldn’t understand what I told them about taking care of Willow. I had to be her advocate, and I had to be there all the time.” She shrugged. “We don’t give big birthday or Christmas gifts. We don’t have IRAs or a college fund for the kids. We don’t take vacations. All of our money goes to pay for what insurance doesn’t.”

“Like?”

“Willow’s in a clinical study for her pamidronate, which means it’s free, but once she’s a certain age she can’t be part of the study anymore, and each infusion is over a thousand dollars. Leg braces cost five thousand dollars each, rodding surgeries are a hundred thousand. A spinal fusion, which Willow will have to have as a teen, can be several times that, and that’s not counting the flight to Omaha to have it done. Even if insurance pays for part of these things, the rest is left to us. And there are plenty of smaller items that add up: wheelchair maintenance, sheepskin to line casts, ice packs, clothes that can accommodate casts, different pillows to make Willow more comfortable, ramps for handicapped access into the house. She’ll need more equipment as she gets older—reachers and mirrors and other adaptations for short stature. Even a car with pedals that are easier to press down on, so they don’t cause microfractures in her feet, costs tens of thousands of dollars to get rigged correctly, and Vocational Rehabilitation will pay for only one vehicle—the rest are your responsibility, for life. She can go to college, but even that will cost more than usual, because of the adaptations necessary—and the best schools for kids like Willow aren’t nearby either, which means more travel expenses. We cashed out my husband’s 401(k) and took out a second mortgage. I’ve maxed out two credit cards.” Charlotte looked over at the jury. “I know what I look like to all of you. I know you think I’m in this for a big payday, that this is why I started this lawsuit.”