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 healthcare 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
T
he 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 nothing 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.'
I stilled, not sure what she was doing; this was not what we had practiced. 'Charlotte, have you--'
'Please,' she said. 'Let me finish. It is about cost. But not the financial kind.' She blinked back tears. 'I don't sleep at night. I feel guilty when I laugh at a joke on TV. I watch little girls the same age as Willow at the playground, and I hate them sometimes - that's how bitterly jealous I can get when I see how easy it is for them. But the day I signed that DNR in the hospital, I made a promise to my daughter. I said, If you fight, I will, too. If you live, I will make sure your life is the best it can possibly be. That's what a good mother does, right?' She shook her head. 'The way it usually works, the parent takes care of the child, until years later, when the roles are reversed. But with Willow and me, I'll always be the one taking care of her. That's why I'm here today. That's what I want you to tell me. How am I supposed to take care of my daughter after I'm gone?'
You could have heard a pin drop, a heart beat. 'Your Honor,' I said. 'Nothing further.'
Sean
T
he sea was a monster, black and angry. You were equally terrified and fascinated by it; you'd beg to go watch the waves crash against the retaining wall, but every time they did, you shivered in my arms.
I had taken the day off work because Guy Booker had said that all witnesses had to come to the trial on the first day. But as it turned out, I couldn't be in the courtroom anyway, until my testimony. I stayed for ten minutes - just long enough for the judge to tell me to leave.
This morning, I'd realized that Charlotte thought I was coming to court to support her. I could see why, after the night before, she would expect that. In her arms, I had been explosive, enraged, and tender by turns - as if we were playing out our feelings in a pantomime beneath the sheets. I knew she was upset when I told her I was meeting Guy Booker, but she should have understood better than anyone why I still needed to testify against her in this lawsuit: you did what you had to do to protect your child.
After leaving the courthouse, I'd driven home and told the hired nurse to take the afternoon off. Amelia would need to be picked up at school at three, but in the meantime, I asked what you wanted to do. 'I can't do anything,' you said. 'Look at me.'
It was true, your entire left leg was splinted. But all the same, I didn't see why I couldn't get a little creative to boost your spirits. I carried you out to the car, wrapped in blankets, and tucked you sideways across the backseat so that your leg was stretched along it. You could still wear your seat belt this way, and as you began to spot the familiar landmarks that led to the ocean, you got more and more animated.
There was nobody at the beach in late September, so I could park sideways across the lot that butted up to the retaining wall, giving you a bird's-eye view. The truck's cab sat high enough for you to see the waves, creeping forward and slinking backward like great gray cats. 'Daddy?' you asked. 'How come you can't skate on the ocean?'
'I guess you can, way up in the Arctic, but for the most part, there's too much salt in the water for it to freeze.'
'If it did freeze, wouldn't it be awesome if there were still waves? Like ice sculptures?'
'That would be cool,' I agreed. I glanced over my headrest at you. 'Wills? You okay?'
'My leg doesn't hurt.'
'I wasn't talking about your leg. I was talking about what's going on today.'
'There were a lot of TV cameras this morning.'
'Yeah.'
'Cameras make my stomach hurt.'
I threaded my arm around the seat to reach your hand. 'You know I'd never let any of those reporters bother you.'
'Mom should bake for them. If they really loved her brownies or her toffee bars, they might just say thank you and leave.'
'Maybe your mom could add arsenic to the batter,' I mused.
'What?'
'Nothing.' I shook my head. 'Your mom loves you, too. You know that, right?'
Outside, the Atlantic reached a crescendo. 'I think there are two different oceans - the one that plays with you in the summer, and the one that gets so mad in the winter,' you said. 'It's hard to remember what the other one's like.'
I opened my mouth, thinking that you hadn't heard what I said about Charlotte. And then I realized that you had.
Charlotte
G
uy Booker was just the sort of person that Piper and I would have laughed at if we'd come across him at Maxie's Pad - an attorney who had gotten so big in his own head that he had a personalized license plate which read HOTSHOT on his mint green T-Bird. 'This is really about the money, isn't it?' he said.
'No. But the money means the difference between good care and lousy care for my daughter.'
'Willow receives Katie Beckett monies through Healthy Kids Gold, doesn't she?'
'Yes, but even so, that doesn't cover all the medical expenses - and none of the out-of-pocket ones. For example, when a child's in a spica cast, she needs a different kind of car seat. And the dental problems that are part and parcel of OI might run thousands of dollars a year.'
'If your daughter had been born a gifted pianist, would you be asking for money for a grand piano?' Booker said.
Marin had told me that he would try to get me angry, so that the jury would like me less. I took a deep breath and counted to five. 'That's comparing apples and oranges, Mr Booker. This isn't an arts education we're talking about. It's my daughter's life.'
Booker walked toward the jury; I had to suppress an urge to check if he left a trail of oil. 'You and your husband don't see eye to eye about this lawsuit, Ms. O'Keefe, correct?'
'No, we do not.'
'Would you agree that the cause of your pending divorce is that your husband, Sean, doesn't support this lawsuit?'
'Yes,' I said softly.
'He doesn't believe Willow was a wrongful birth, does he?'
'Objection,' Marin called out. 'You can't ask her what his opinion is.'
'Sustained.'
Booker folded his arms. 'Yet, you're going through with the lawsuit anyway, even though it will most likely split up your family, aren't you?'
I pictured Sean in his coat and tie this morning, that tiny lift of spirit I'd had when I thought he was coming to court with me instead of against me. 'I still think it's the right thing to do.'
'Have you had conversations with Willow about this lawsuit?' Booker asked.
'Yes,' I said. 'She knows I'm doing this because I love her.'
'You think she understands that?'
I hesitated. 'She's only six. I think a lot of the mechanics of the lawsuit have gone over her head.'
'What about when she's older?' said Booker. 'I bet Willow's pretty good when it comes to computer skills?'
'Sure.'
'Have you ever thought about the moment years from now when your daughter gets on the Internet and googles herself? You? This case?'
'Well, God knows I'm not looking forward to that, but I hope that, if it happens, I'll be able to explain to her why it was necessary . . . and that the quality of her life that day is a direct result of the lawsuit.'
'God knows,' Booker repeated. 'Interesting choice of words. You're a practicing Catholic, aren't you?'
'Yes.'
'As a practicing Catholic, you're aware that it's a mortal sin to have an abortion?'
I swallowed. 'Yes, I am.'
'Yet the premise of this lawsuit is that, if you'd known about Willow's condition earlier, you would have terminated the pregnancy, right?'
I could feel the eyes of the jury on me. I had known that there was a point where I would be put on display - the sideshow oddity, the zoo animal - and this was it. 'I know what you're doing,' I said tightly. 'But this case is about malpractice, not abortion.'
'That's not an answer, Ms. O'Keefe. Let's try again: if you'd found out that you were carrying a child who was profoundly deaf and blind, would you have terminated the pregnancy?'
r /> 'Objection,' Marin cried. 'That's irrelevant. My client's child isn't deaf and blind.'
'It goes to the mind-set of whether or not the child's mother could have done what she says she could,' Booker argued.
'Sidebar,' Marin said, and they both approached the bench, continuing to argue loudly in front of everyone. 'Judge, this is prejudicial. He can ask what my client's decision was regarding actual medical facts that the defendant did not share with her--'
'Don't tell me how to try my case, sweetheart,' Booker said.
'You arrogant pig--'
'I'm going to allow the question,' the judge said slowly. 'I think we all need to hear what Mrs O'Keefe has to say.'
Marin gave me a measured look as she walked past the witness stand - a reminder that I had been called to the mat, and was expected to deliver. 'Ms. O'Keefe,' Booker repeated, 'would you have aborted a profoundly deaf and blind child?'
'I . . . I don't know,' I said.
'Are you aware that Helen Keller was profoundly blind and deaf?' he asked. 'What if you found out that the baby you were carrying was missing a hand? Would you have terminated that pregnancy?'
I kept my lips pressed tight, silent.
'Are you aware that Jim Abbott, a one-handed pitcher, pitched a no-hitter in major league baseball and won an Olympic gold medal in 1988?' Booker said.
'I'm not Jim Abbott's mother. Or Helen Keller's. I don't know how difficult their childhoods were.'
'Well, then, we're back to the original question: If you had known about Willow's condition at eighteen weeks, would you have aborted her?'
'I was never given that option,' I said tightly.
'Actually, you were,' Booker countered. 'At twenty-seven weeks. And by your own testimony, it wasn't a decision you could make then. So why should a jury believe that you would have been able to make it several weeks earlier?'
Malpractice, Marin had drilled into my head, over and over. That's why you instigated this lawsuit. No matter what else Guy Booker claims, it's about a standard of care and a choice you weren't offered.
I was shaking so hard that I slipped my hands beneath my thighs. 'This case isn't about what I might have done.'
'Sure it is,' Booker said. 'Otherwise, it's a waste of our time.'