by Kent, Julia
“I know!”
A tall man with buzzed gray hair held out his hand. “I’m Dr. Fletcher. I’m coordinating the transfer of your baby to a unit in El Paso.”
“Why are we going there?”
The doctor perched on a stool at Corabelle’s feet. “Your baby has a very serious condition called hypoplastic left heart syndrome. We first suspected a heart problem when we listened to his heart tones right after birth. The attending obstetrician was on top of it, which was why Finn was taken so quickly to be checked. The first few hours are very important.”
I moved to Corabelle’s side to hold her hand, for her or for me, I wasn’t sure. She wasn’t crying right then, just listening, her brown eyes wide and full of fear.
“We did some imaging of Finn’s heart and confirmed the defect. Unfortunately, this hospital is not prepared to manage the care of a baby in this condition. He’ll need a heart specialist and a surgeon, possibly within the next 24 hours.”
Corabelle sobbed then, and I gripped her hand hard. “What will happen?” I asked.
“He’ll be assessed on his ability to withstand the surgery. Then you will be given choices about going forward with the surgery or choosing palliative care.”
“You mean watching him die?” Corabelle’s voice was strained and choked.
“The team there is very good. They will do everything they can.”
“Why haven’t we already gone?” Corabelle asked. “Finn’s been here for hours.”
The doctor glanced at one of the nurses. “We had to stabilize him to survive the trip. He’s in very critical condition.”
“Oh my God,” Corabelle said. “He could die any minute?”
“His heart is not very strong. The left side is barely functional. We’ve left the ductus arteriosus open, a vessel that connects the two parts of the heart, one that normally closes at birth. This way we can keep Finn’s heart working until surgery. But it will have to happen within a few days.”
“Or what?” I asked.
“He’ll eventually go into cardiac arrest. But that is the same risk if we do close it. This gives us time to work on his heart.”
My blood was pounding in my ears so hard that I wasn’t sure I could hear anymore. I looked at Corabelle, ghostly white against her pillow. She took several rapid breaths, then sat up and threw her legs over the side of the bed. “I have to get dressed.”
“You can’t leave yet. You just had the baby!” I said.
“I’m not staying here while they take Finn away!” She limped to the sofa, where her duffel bag waited, and started jerking clothes out of it.
“Can she do that? Can she go?”
The doctor looked at the nurses. “When will she get discharged?”
“Tomorrow at the earliest. Possibly another day,” one said. “She’s only six hours postpartum.”
Corabelle whirled around. “I’m walking out of here whether you sign a paper or not.”
The doctor nodded. “Did everything go normally for her?”
The nurse picked up her chart. “I didn’t attend, but everything here looks clear.”
“Let her go. Inform her OB.”
Tears streaked Corabelle’s face. “Thank you.” She turned to me. “Help me dress.”
Another nurse came in. “They are ready to transfer.”
“Never mind,” Corabelle said. She stuck her feet in her shoes. “I’m going like this.” She shoved her bag at me. “I’m riding with the baby.”
“Get her a wheelchair,” the doctor said. “Take her down.”
Once we got to the hospital, Corabelle started checking out books and making sure she understood every term. We were given a room at the Ronald McDonald House, and she printed out internet searches, peppering the doctors with questions whenever anyone made rounds.
Finn was enclosed in a clear incubator. We could snake our hands through round openings on the side and touch his hands and head wherever the wires weren’t taped. Corabelle kept a vigil, standing by him as much as she could, or sitting in one of the rockers that seemed to be a staple in NICU wards.
The room was never silent, but whirred and buzzed with alarms and machines. On the first day, I thought I would go mad with it, but eventually I learned to cope. We had nothing to do but this, no school, no job, just be there for Finn, to sit in the ward, watch them run the tests or wheel him out when he had to be assessed on some other floor.
The journey had been hard on him, and at the new hospital we saw the nurses come over to him when he had something called apnea, where he stopped breathing. Apparently during one of the nights we weren’t there, they had to do CPR to restart his heart. We were waiting for some definitive word, and we talked to so many doctors, from normal baby doctors to heart specialists. It seemed every time they made a decision, something would happen to Finn, and they would want to assess him again.
Corabelle’s mom tried to convince us to go home for prom, to try to enjoy a night out. Corabelle had a fit. “How can you even suggest that, when Finn is so ill?”
The last time we saw the neonatologist, on the morning of prom, he said the surgeon would be meeting with us. “Why hasn’t he already had surgery?” Corabelle demanded, shoving a printout in the man’s face. “Five days is the recommended maximum to keep the ductus open. It’s been seven!”
I could see what Corabelle couldn’t. The man’s face was a mask of professionalism, of detachment. They’d given up on Finn, but they hadn’t told us yet. I couldn’t bring myself to say this to Corabelle, even though I knew.
Her phone had been blowing up with messages all day. Everyone seemed to think that since Finn was okay all week, he’d be okay for the night. Several of Corabelle’s friends sided with her mother, telling her to get back home and attend her prom.
“They don’t get it.” Corabelle threw her phone in her purse. “We can’t go dance and laugh and have our pictures made. This is our whole life.” She pressed on her swollen breasts. “Besides, I can’t exactly pump milk in the middle of the crowning of the king and queen.”
I sat on the floor of the NICU, leaning back against the seat of her rocking chair, her knees on either side of my shoulders. My arms wound around her legs. I didn’t know how anybody did this long-term, just waited. Corabelle had talked to some of the other mothers, but their babies were all doing well, growing and getting better. She couldn’t bear it any more than seeing the curtains get wrapped around a family and a bed, rolled along a track to hide their tragedy from the other occupants of the ward. Two babies had died in the week we’d been there, and both times Corabelle had sobbed half the night.
Our favorite NICU nurse, Angilee, came and got us for the last meeting with the doctors, her face somber. Unlike the other times, when they talked to us in the ward or the hallways or the waiting rooms, this time we were led to a conference room with a large table and rolling chairs.
A nurse brought in a cart with a computer on it inside the room. Inside was one of the NICU doctors who talked to us every day, plus two other new ones, a man and a woman. They stood when we walked in.
My senses immediately went on alert. This was too formal. Something bad was about to go down. At the last minute another woman rushed in, dressed in regular clothes.
I don’t remember everything they said. They showed us an MRI of Finn’s brain they’d done during the night. They talked about lack of oxygen and mental activity, about what sort of life he might lead even with surgery.
Corabelle demanded to know why surgery hadn’t happened yet, more force in her voice than I’d ever seen. I remember staring at the image of a brain, all strange colors like they’d dyed it with Kool-Aid. Then Corabelle was standing up, shouting, and I pulled on her, tried to bring her down. “They want us to take out the tubes,” she said to me. “Don’t just sit there and let them take out the tubes.”
One of the doctors turned to me. “Finn is almost completely dependent on the ventilator now. Instead of growing stronger for surgery, he’s
weakened. There really isn’t any hope for a recovery.”
“So you get to decide?” I asked. “You make the choice about whether he lives or dies?”
The doctor looked over at the others. “It’s come down to how long this will go on.”
“But you’re supposed to fix his heart,” Corabelle said, her face doused in tears. “You were supposed to do surgery.”
“It’s a complex surgery,” one of the other doctors said. “We don’t think the prognosis in this case is good enough to attempt it.”
“So you’re saying no?” Corabelle said. “Is that what you’re saying? No surgery? No chance?”
The woman spoke up then. “No decision of this magnitude is ever made by one person.”
Corabelle sagged in her chair, dropping her head to the table.
The first doctor stood. “I’m very sorry for your loss,” he said.
I wanted to punch him. It hadn’t even happened yet. Finn was still in there, breathing along with a machine, his heartbeats still registering on the monitors. He wasn’t lost. He was in there.
Corabelle ran from the room, back to the NICU. I wanted to follow her but the woman in regular clothes stopped me. “We have forms to be taken care of,” she said.
“What sort of forms?” I demanded.
The doctors filed out as she spread papers out on the table. “This is just to initiate measures to make the baby comfortable.”
“Comfortable how?”
“We’re shifting into a different kind of care now,” she said quietly.
“What if we don’t agree? What if we want another opinion?”
“Finn has been assessed by several doctors. But if you’d like to have a meeting with the hospital ethics committee, it can be scheduled.”
I sank back down in the chair. “Who are you again?”
“I’m Alice, the social worker.”
“So you see this sort of thing all the time?”
“This is part of my job, yes.”
“If Finn was your baby, would you do this?”
She sat in the chair next to me. “It’s hard to let go. Only you as Finn’s family can decide when you’re ready, when you feel you’ve exhausted all your options.”
“But they won’t do the surgery.”
She set down the pen. “They don’t feel it would be successful, and it is a difficult, painful, long surgery.”
I held my head in my hands, staring at the sheets of paper. Finn would be cut open, his heart sliced up, and all for nothing. That’s what they were saying.
I snatched up the pen, scrawling my name everywhere there was a flag. They’d already prepared all of this before the meeting, so anything we said wouldn’t have changed what happened. Even so, her words nagged at me. Only you as Finn’s family can decide.
When the woman finally picked up the papers, I hurried after Corabelle. She was in the NICU, leaning over Finn’s bed, stroking his head. “We didn’t get much parenting in, did we?”
I came up behind her and put my arms around her waist. “We crammed in all we could.”
Finn’s chest rose and fell with the ventilator. I’d never gotten used to the sound, a choppy mechanical wheeze. A nurse arrived and shot something into his IV. “We’re giving him a stronger medication. He’ll rest very peacefully now.” I had no idea what she was talking about, but not long after that, I could see he had changed, his arms flatter against the bed, his legs very still. He was more than asleep now. He was out.
“What did they do to him?” Corabelle asked. She picked up his limp hand.
I knew they had sedated him, and that this was the beginning. “You should call your parents now,” I said. “They should be here.”
Corabelle fumbled with her phone. I knew I should probably call my mother, but I couldn’t bring myself to do it. She might bring my father, and I didn’t want him there.
The staff didn’t allow calls in the NICU, other than in emergencies, so Corabelle left the ward. I was alone with Finn, seeing the same things Corabelle had seen. He already seemed gone. The machine continued its helicopter sound. I tried to picture him somewhere else, asleep in the crib at home, the butterfly mobile fluttering above his head. He was healthy and fine, and if I wanted to, I could pick him up, stick him on my shoulder, and carry him around with me, warm and breathing and curled into my neck. I’d never held him. No one had. I wasn’t sure any of us would.
A nurse walked by, and I reached out to stop her. “So what happens now?”
“What do you mean?”
I could see she didn’t know what had been decided earlier that day. “When they turn all of this off.” I gestured vaguely at all the machinery.
Her eyes grew wide. “Let me get someone who is updated on Finn.” She stroke briskly away.
The nurse Angilee popped around the corner. “I’m so sorry, Gavin. Finn is such a beautiful little boy. You two can decide what time we remove the ventilator. We usually do it around eight in the evening, as that is a quiet time here. Does that give your family time to be here? Or do you want another time?”
I tried to answer her, but my mouth had gone completely dry. “I will ask Corabelle if eight works.”
She took my hand, her dark fingers surrounding mine. Her braids were tied together in an intricate weave, like a halo on her head. “Do you want to have Finn baptized?”
“I don’t know,” I croaked out. “I need to ask Corabelle. Our families aren’t very religious.”
She squeezed my hand. “Let me know. We have a chaplain here. I’ll just need some notice to make sure he can fit it in sometime today.”
“So what happens?”
“Well, first we’ll seat Corabelle in a chair, and then we’ll take off the monitor wires so we can move Finn out of the bed.” She pointed to the disks on his chest. “He’ll still be on the ventilator.” She let go of me and moved around the machines to point out the thick air tubes that led to his mouth.
“This we can move with him, and we’ll untape it. When you both are ready, we’ll take it out.”
I gripped the edge of the bed. “Will he die right away?”
“Not usually. He’ll breathe a little on his own for a little while. But he won’t be pumping enough oxygen.”
“He’s going to suffocate?”
Angilee came back around and rubbed my back. “We will not let Finn be in any pain whatsoever.”
“He’s sedated, isn’t he?”
“He has been since he was given the ventilator, for his safety.”
“But it’s more now.”
She hesitated. “Yes.”
“He doesn’t feel anything?”
“Nothing at all.”
So he really was already gone. Anything we said to him, any touch we did. I had made that choice. I had signed the paper and now it was too late to even say good-bye.
“He’s still with us, Gavin. He’s still here.” She pulled a clipboard from the shelf above the machine and wrote his statistics on it.
“How long will it take, once he’s off?”
“That’s up to Finn. He’ll decide when he’s done.”
Corabelle came back, her eyes all red. “Mom wants him baptized. Can we do that?”
“Absolutely,” Angilee said. “Come here, child.” She wrapped Corabelle into a deep hug. “Is she going to ask her minister or should I get the chaplain here?”
“I guess someone here.”
“I’ll call him. He’ll come talk to you about it.” She pulled away from Corabelle and looked into her face. “So much to bear for someone so young.”
Corabelle started crying again, and Angilee walked her over to me. “I’ll be back. Someone will be with you pretty much from now until it’s time.”
Corabelle looked over to me. “When is it time?”
“Eight o’clock, unless we want to change it.”
She whipped around to look at the clock. “Eight more hours! Eight more hours!” Her legs seemed to give out, and I helped her to th
e rocking chair. “What can we do in eight hours?”
I didn’t have an answer for her.
“I have to read him a storybook!” Corabelle said, popping back out of the chair. “And sing him a nursery rhyme.” She walked up to the enclosed crib. “I have to teach him ‘Twinkle, Twinkle, Little Star.’” She looked up at me, and I knew I’d be haunted by her expression for a long time as she said, “We’re never going to take him to Disney World, are we?”
I stood next to her, wishing I were anywhere but there, but at the same time, that I would never have to leave.
Chapter 34: Corabelle
Gavin was awfully quiet on the rock as we lay beneath the stars. I nudged him finally. “Do you want a sandwich?” I asked him.
The half moon let out so little light that he was only a shadow in the almost complete blackness. “Maybe in a minute.” His voice sounded off.
“You okay?”
He didn’t answer, which I took to mean he wasn’t. “What is getting you?” I asked.
“Just remembering that last day.”
“The funeral?”
“No. With Finn.”
“Oh.”
“Remember Angilee, the nurse?”
“She was good,” I managed to get out.
“Once things got started, she didn’t leave us for a minute.”
“She must have worked past her shift.”
“I think so.”
“She got us that crazy chaplain.”
His belly moved beneath my hand, a gentle laugh. “He was something.”
“God bless this holy child! Alleluia!” I mimicked the animated speech of the minister, who’d made Finn’s baptism seem like a tent revival.
We both laughed halfheartedly. My mom had wanted the baptism, and I was glad we did it. We got pictures of him and could celebrate his one little life event. Mom brought a white lace bib to put over his chest and the wires, and a little satin hat.
For once I never wanted a prayer to end. The chaplain had arrived at 7:30, and I knew that as soon as the baptism ended, they’d start the process of disconnecting Finn. As the chaplain went on and on about suffering and salvation, I kept my eyes on the baby. He seemed so relaxed, so perfect, like a doll waiting for someone to pick him up to play.