Jodi Picoult - Handle with Care

“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 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 .”