Handle With Care Read online

  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.