by Jodi Picoult
“I thought that could cause a miscarriage,” Charlotte said.
“It can. But the risk of that is one in two hundred and seventy—right now, less than the chance that the baby has Down syndrome.”
Charlotte rubbed a hand down her face. “So this amniocentesis,” she said. “If it turns out that the baby has . . .” Her voice trailed off. “Then what?”
I knew Charlotte was Catholic. I also knew, as a practitioner, that it was my responsibility to give everyone all the information I had whenever possible. What they chose to do with it, based on their personal beliefs, was up to them. “Then you can decide whether or not to terminate,” I said evenly.
She looked up at me. “Piper, I worked too hard to have this baby. I’m not going to give it up that easily.”
“You should talk this over with Sean—”
“Let’s do the ultrasound,” Charlotte decided. “Let’s just take it from there.”
For all of these reasons, I remember very clearly the first time we saw you on the screen. Charlotte was lying down on the examination table; Sean was holding her hand. Janine, the ultrasound tech who worked at my practice, was taking the measurements before I went in to read the results myself. We would be looking for hydrocephalus, an endocardial cushion defect or abdominal wall defect, nuchal fold thickening, a short or absent nasal bone, hydronephrosis, echogenic bowel, shortened humeri or femurs—all markers used in the ultrasound diagnosis of Down syndrome. I made sure that the machine we used was one that had only recently arrived, brand-new, the ultimate technology at the time.
Janine came into my office as soon as she finished the scan. “I’m not seeing any of the usual suspects for Down,” she said. “The only abnormality is the femurs—they’re in the sixth percentile.”
We got readings like that all the time—a fraction of a millimeter for a fetus might look much shorter than normal and, at the next sonogram, be perfectly fine. “That could be genetics. Charlotte’s tiny.”
Janine nodded. “Yeah, I’m going to just mark it down as something to keep an eye on.” She paused. “There was something weird, though.”
My head snapped up from the file I was writing in. “What?”
“Check out the pictures of the brain when you’re in there.”
I could feel my heart sink. “The brain?”
“It looks anatomically normal. But it’s just incredibly . . . clear.” She shook her head. “I’ve never seen anything like it.”
So the ultrasound machine was exceptionally good at its job—I could see why Janine would be over the moon, but I didn’t have time to rhapsodize about the new equipment. “I’m going to tell them the good news,” I said, and I went into the examination room.
Charlotte knew; she knew as soon as she saw my face. “Oh, thank God,” she said, and Sean leaned over to kiss her. Then she reached for my hand. “You’re sure?”
“No. Ultrasound isn’t an exact science. But I’d say the odds of having a normal, healthy baby just increased dramatically.” I glanced at the screen, a frozen image of you sucking your thumb. “Your baby,” I said, “looks perfect.”
• • •
In my office, we did not advocate recreational ultrasounds—in layman’s terms, that means ultrasounds beyond those medically necessary. But sometime in Charlotte’s twenty-seventh week, she came to pick me up to go to a movie, and I was still delivering a baby at the hospital. An hour later, I found her in my office with her feet propped on the desk as she read a recent medical journal. “This is fascinating stuff,” she said. “ ‘Contemporary Management of Gestational Trophoblastic Neoplasia.’ Remind me to take one of these the next time I can’t fall asleep.”
“I’m sorry,” I said. “I didn’t think I’d be this late. She made it to seven centimeters and then stopped dead.”
“It’s no big deal. I didn’t really want to see a movie anyway. The baby’s been dancing on my bladder all afternoon.”
“Future ballerina?”
“Or placekicker, if you believe Sean.” She looked up at me, trying to read my face for clues about the baby’s sex.
Sean and Charlotte had chosen not to find out in advance. When parents told us that, we wrote it in their files. It had taken a Herculean effort for me to not peek during the ultrasound, so that I wouldn’t inadvertently give away the secret.
It was seven o’clock; the receptionist had gone home for the day; the patients were all gone. Charlotte had been allowed to wait for me only because everyone knew we were friends. “We wouldn’t have to tell him that we know,” I said.
“Know what?”
“The baby’s sex. Just because we missed the movie doesn’t mean we can’t catch another one . . .”
Charlotte’s eyes widened. “You mean an ultrasound?”
“Why not?” I shrugged.
“Is it safe?”
“Absolutely.” I grinned at her. “Come on, Charlotte. What have you got to lose?”
Five minutes later, we were in Janine’s ultrasound suite. Charlotte had hiked her shirt up beneath her bra, and her pants were pushed down low on her abdomen. I squirted gel onto her belly, and she squealed. “Sorry,” I said. “Cold.” Then I picked up the transducer and moved it over her skin.
The picture of you rose on the screen like a mermaid coming up to the water’s surface: black one moment, and then slowly solidifying into an image we could recognize. There was a head, a spine, your tiny hand.
I swept the transducer to a point between your legs. Instead of the crossed bones of a fetus cramped inside the womb, your soles touched each other, your legs practically forming a circle. The first break I saw was the femur. It was angulated, bent acutely, instead of being straight. On the tibia I could see a line of black, a new fracture.
“So?” Charlotte said happily, craning her neck to see the screen. “When do I get to see the family jewels?”
I swallowed, moving the transducer up to see the barrel of your chest and the beaded ribs. There were five healing fractures here.
The room started spinning around me. Still holding the transducer, I leaned forward, settling my head between my knees. “Piper?” Charlotte said, coming up on her elbows.
I had learned about osteogenesis imperfecta in medical school, but I had never actually seen a case. What I remembered about it were pictures of fetuses with in vitro fractures like yours. Fetuses that died at birth or shortly after.
“Piper?” Charlotte repeated. “Are you okay?”
Pulling myself upright, I drew in a deep breath. “Yes,” I said, my voice breaking. “But Charlotte . . . your daughter’s not.”
Sean
The very first time I heard the words osteogenesis imperfecta was after Piper drove Charlotte home, hysterical, from that off-the-cuff ultrasound in Piper’s office. With Charlotte sobbing in my arms, I tried to make sense of the words Piper was lobbing at me like missiles: collagen deficiency, bones angulated and thickened, beaded ribs. She had already called a colleague, Dr. Del Sol, who was a high-risk maternal-fetal-medicine physician at the hospital. We had an appointment for another ultrasound at 7:30 a.m.
I had just come home from work—a construction detail that had been hellish because it had rained the entire afternoon and evening. My hair was still damp from the shower, my shirt sticking to the damp skin of my back. Amelia was upstairs watching TV in our bedroom, and I had been holding a container of ice cream, eating right out of it with a spoon, when Piper and Charlotte came into the house. “Damn,” I said. “You caught me right in the act.” Then I realized that Charlotte was crying.
It never failed to amaze me how the most ordinary day could be catapulted into the extraordinary in the blink of an eye. Take the mother who was handing a toy to her toddler in the backseat one moment, and in a massive motor vehicle accident the next. Or the frat boy who was chugging a beer on the porch as we drove up to arrest him for sexually assaulting another student. The wife who opened the door to find a police officer bearing the news of her
husband’s death. In my job, I’d often been present at the transition when the world as you knew it became the disaster you never expected—but I had not been on the receiving end before.
My throat felt like it had been lined with cotton. “How bad?”
Piper looked away. “I don’t know.”
“This osteopatho—”
“Osteogenesis imperfecta.”
“How do you fix it?”
Charlotte had drawn back from me, her face swollen, her eyes red. “We can’t,” she said.
• • •
That night, after Piper had left and Charlotte had finally fallen into a fitful sleep, I got on the Internet and Googled OI. There were four types, plus three more that had recently been identified, but only two of them showed fractures in utero. Type II infants would die before birth, or shortly after. Type III infants would survive but could have rib fractures that caused life-threatening breathing problems. Bone abnormalities would get worse and worse. These children might never walk.
Other words started jumping off the screen:
Wormian bones. Codfish vertebrae. Intramedullary rodding.
Short stature—some people grow only three feet tall.
Scoliosis. Hearing loss.
Respiratory failure is the most frequent cause of death, followed by accidental trauma.
Because OI is a genetic condition, it has no cure.
And
When diagnosed in utero, the majority of these pregnancies end in pregnancy interruption.
Below this was a photograph of a dead infant who’d had Type II OI. I could not tear my eyes away from the knotted legs, the shifted torso. Was this what our baby looked like? If so, wasn’t it better to be stillborn?
At that thought, I squeezed my eyes shut, and prayed to God that He hadn’t been listening. I would have loved you if you’d been born with seven heads and a tail. I would have loved you if you never drew breath or opened your eyes to see me. I already loved you; that didn’t stop just because there was something wrong with the way your bones were made.
I quickly cleared the search history so that Charlotte wouldn’t accidentally bring up the photograph when she was surfing the Net, and moved upstairs quietly. I stripped in the dark and slid into bed beside your mother. When I wrapped my arms around her, she shifted closer to me. I let my hand fall over the swell of her belly just as you kicked, as if to tell me not to worry, not to believe a word I read.
• • •
The next day, after another ultrasound and an X-ray, Dr. Gianna Del Sol met us in her office to go over the report. “The ultrasound showed a demineralized skull,” she explained. “Her long bones are three standard deviations off the mean, and they’re angulated and thickened in a way that shows both healing fractures and new ones. The X-ray gave us a better picture of the rib fractures. All of this indicates that your baby has osteogenesis imperfecta.”
I felt Charlotte’s hand slip underneath mine.
“Based on the fact that we’re seeing multiple fractures, it seems like we’re talking about Type II or Type III.”
“Is one worse than the other?” Charlotte asked. I looked into my lap, because I already knew the answer to that.
“Type IIs normally do not survive after birth. Type IIIs have significant disabilities and sometimes early mortality.”
Charlotte burst into tears again; Dr. Del Sol passed her a box of tissues.
“It’s very hard to tell whether an infant has Type II or Type III. Type II can sometimes be diagnosed by ultrasound at sixteen weeks, Type III at eighteen. But every case is different, and your earlier ultrasound didn’t reveal any fractures. Because of that, we can’t give you an entirely accurate prognosis—beyond the fact that the best-case scenario is going to be severe, and the worst case will be lethal.”
I looked at her. “So even when you think it’s Type II, and that a baby has no chance of survival, it might beat the odds?”
“It’s happened,” Dr. Del Sol said. “I read a case study about parents who were given a lethal prognosis yet chose to continue the pregnancy and wound up with an infant with Type III. However, Type III kids are still severely disabled. They’ll have hundreds of breaks over the course of their lives. They may not be able to walk. There can be respiratory issues and joint problems, bone pain, muscle weakness, skull and spinal deformities.” She hesitated. “There are places that can help you, if termination is something you want to consider.”
Charlotte was twenty-seven weeks into her pregnancy. What clinic would do an abortion at twenty-seven weeks?
“We’re not interested in termination,” I said, and I looked at Charlotte for confirmation, but she was facing the doctor.
“Has there ever been a baby born here with Type II or Type III?” she asked.
Dr. Del Sol nodded. “Nine years ago. I wasn’t here at the time.”
“How many breaks did that baby have when it was born?”
“Ten.”
Charlotte smiled then, for the first time since last night. “Mine only has seven,” she had said. “So that’s already better, right?”
Dr. Del Sol hesitated. “That baby,” she said, “didn’t survive.”
• • •
One morning, when Charlotte’s car was being serviced, I took you to physical therapy. A very nice girl with a gap between her teeth whose name was Molly or Mary (I always forgot) made you balance on a big red ball, which you liked, and do sit-ups, which you didn’t. Every time you curled up on the side of your healing shoulder blade, your lips pressed together, and tears would streak from the corners of your eyes. I don’t even think you knew you were crying, really—but after watching this for about ten minutes, I couldn’t stand it anymore. I told Molly/Mary that we had another appointment, a flat lie, and I settled you in your wheelchair.
You hated being in the chair, and I couldn’t say I blamed you. A good pediatric wheelchair was best when it was fitted well, because then you were comfortable, safe, and mobile. But they cost over $2800, and insurance would pay for one only every five years. The wheelchair you were riding in these days had been fitted to you when you were two, and you’d grown considerably since then. I couldn’t even imagine how you’d squeeze into it at age seven.
On the back of it, I had painted a pink heart and the words HANDLE WITH CARE. I pushed you out to the car and lifted you into your car seat, then folded the wheelchair into the back of the van. When I slid into the driver’s seat and checked you in the rearview mirror, you were cradling your sore arm. “Daddy,” you said, “I don’t want to go back there.”
“I know, baby.”
Suddenly I knew what I would do. I drove past our exit on the highway, to the Comfort Inn in Dover, and paid sixty-nine dollars for a room I had no plans to use. Strapped in your wheelchair, I pushed you to the indoor pool.
It was empty on a Tuesday morning. The room smelled heavily of chlorine, and there were six chaise lounges in various states of disrepair scattered around. A skylight was responsible for the dance of diamonds on the surface of the water. A stack of green and white striped towels sat on a bench beneath a sign: SWIM AT YOUR OWN RISK.
“Wills,” I said, “you and I are going swimming.”
You looked at me. “Mom said I can’t, until my shoulder—”
“Mom isn’t here to find out, is she?”
A smile bloomed on your face. “What about our bathing suits?”
“Well, that’s part of the plan. If we stop off home to get our suits, Mom’ll know something’s up, won’t she?” I stripped off my T-shirt and sneakers, and stood before you in a pair of faded cargo shorts. “I’m good to go.”
You laughed and tried to get your shirt over your head, but you couldn’t lift your arm high enough. I helped, and then shimmied your shorts down your legs so that you were sitting in the wheelchair in your underpants. They said THURSDAY on the front, although it was Tuesday. On the butt was a yellow smiley face.
After four months in the spica cast, your
legs were thin and white, too reedy to support you. But I held you under the armpits as you walked toward the water and then sat you down on the steps. From a supply bin against the far wall, I took a kid’s life jacket and zipped it onto you. I carried you in my arms to the middle of the pool.
“Fish can swim at sixty-eight miles an hour,” you said, clutching at my shoulders.
“Impressive.”
“The most common name for a goldfish is Jaws.” You wrapped your arm around my neck in a death grip. “A can of Diet Coke floats in a pool. Regular Coke sinks . . .”
“Willow?” I said. “I know you’re nervous. But if you don’t close your mouth, a lot of water’s going to go into it.” And I let go.
Predictably, you panicked. Your arms and legs started pinwheeling, and the combined force flipped you onto your back, where you splashed and stared up at the ceiling. “Daddy! Daddy! I’m drowning!”
“You’re not drowning.” I lifted you upright. “It’s all about those stomach muscles. The ones you didn’t want to work on today at therapy. Think about moving slowly and staying upright.” More gently this time, I released you.
You bobbled, your mouth sinking under the water. Immediately, I lunged for you, but you righted yourself. “I can do it,” you said, maybe to me and maybe to yourself. You moved one arm through the water, and then the other, compensating for the shoulder that was still healing. You bicycled your legs. And incrementally, you came closer to me. “Daddy!” you shouted, although I was only two feet away. “Daddy! Look at me!”
I watched you moving forward, inch by inch. “Look at you,” I said, as you paddled under the weight of your own conviction. “Look at you.”
• • •
“Sean,” Charlotte said that night, when I thought she might have already fallen asleep beside me, “Marin Gates called today.”
