Abstract
W
Then my pager went off, and everything changed.
“A patient just rolled in,” the obstetrics resident said when I called back. “Her water broke and she's only 22 weeks.”
“How solid are the dates?” I asked, searching for some margin of error. Despite all the wonders of technology, there are some things only time can accomplish.
“First trimester ultrasound,” the resident responded somberly, referring to the gold standard for dating a pregnancy. “And she's in labor.”
“Any chance of stopping it?”
“I wish. It won't be long now.”
Then, almost as an afterthought, she added, “Oh, and she's carrying triplets.”
“You're kidding,” I said, in not my most sensitive moment. This was beginning to sound like someone's bad idea of a practical joke.
“Do I sound like I'm kidding?”
It was the first time I'd heard her voice break.
“How can I help?” I asked.
In my mind I'd already identified several questions the resident might be asking. Some were straightforward—No, there's no obligation to resuscitate a baby born that premature—and could be communicated over the phone. The others were much harder and would take me away for a while: explaining to the parents why resuscitation wouldn't work, and what we'd do to keep their babies comfortable.
“The parents want everything,” the resident said.
We all want everything for our kids, I thought. Somewhere above me I could hear one of my daughters singing the theme song from Frozen for the millionth time.
“I'm happy to talk to—” I began.
“And the neonatologist thinks they're going to need your help making decisions.”
“What decisions?”
“About how far to keep going.”
I struggled to believe what I was hearing. “We're going to resuscitate?”
“Let me put it this way: I'm standing in the operating room looking at three neonatal teams each prepping their own warming table.”
I needed to get to the hospital, but before that I hurried upstairs to see for myself that my kids were okay. They were, of course, and patiently tolerated the interruption to their karaoke performances and fashion shows. Long ago they got used to me hugging them close and for no apparent reason, especially when my work reminds me of how powerless I am to protect the people I love. Often, after all the lights are out, I make rounds of the kids' rooms, standing in the doorway and just listening to them breathe.
There were three people in the room when I arrived on Labor and Delivery: a dark-haired woman in her 30s lying in the bed who, from the size of her abdomen, looked much farther along than 22 weeks; a man about the same age in a red flannel shirt, sitting beside her and holding her hand; and an older woman who would be a grandmother very soon but not for very long, weeping in the corner.
All I knew about Mary and Tom was what I'd gleaned from the cursory admission note in the chart: first pregnancy, nonsmoking, no prior complications. I tried to build rapport by empathizing with the impossible situation they found themselves in, and then asking them a little bit about themselves, like where they lived and worked. Their replies were factual and polite, up until I inquired whether the babies had names yet. When Mary and Tom had woken up that morning they'd probably thought they had months left to decide, until everything changed for them.
They looked at each other and paused before responding, making me think that no one else had asked. Eventually Mary recited the names precisely so there could be no mistake: Ethan, Amelia, Thomas. When she didn't say anything more it felt like she was waiting for the reassurance that no one else had given her, and that I couldn't, either.
“What have the doctors told you,” I asked, “about the situation?”
At that point Mary started crying, too, so Tom spoke for both of them. And everything he said was accurate: the gestational age, the ruptured membranes, the unstoppable labor.
“But I just wonder,” he said, “if there could be some mistake.”
“You mean about the dates?”
After he nodded, I talked about the early ultrasound and the estimated fetal weights, each well under a pound.
“I wish we were wrong,” I said.
He nodded again, slower this time.
“And I imagine my colleagues have talked about the probabilities.”
There's an online database that we often use to determine the percentage likelihood of death as well as serious, moderate, and less than moderate neurodevelopmental impairment, both for cases where mechanical ventilation is used and where it isn't. Usually a family is overwhelmed by that many numbers, but in this case they were all the same.
“I've been doing some research on the web,” Tom said, “and I found reports of babies this young making it.”
“I have, too,” I said gently, “but those babies weren't triplets.”
“Are you sure?”
I was pretty sure that the 22-weekers who survived were singletons—if that even was what he was asking—but I'm a father, too. I owed it to him to be certain, if only to spare him and his wife the doubt that might come later.
“Let me check on that for you.”
The L&D conference room was standing room only with three times the usual number of doctors and nurses. After double-checking with the obstetrics attending that the resident's report was accurate, I sought out the lead neonatologist.
“No way,” he said, when I asked if the kids had any chance of survival. “And we've all told the parents that.”
“The dad found some studies—”
“Sure, of singletons who were probably older than reported, and who had a full course of steroids. That's a totally different story.”
“But you're still going to try?”
Why give the family hope when there isn't any? I thought.
“They're fully informed,” he said with a hint of resignation, “and that's what they want.”
I looked at the other people in the room, many of whom I've worked with for years and who knew the numbers as well as I did. To a person, they had somber looks on their faces, knowing precisely what they were about to do and just as surely what the result was going to be. And yet none of us could bear to say no to parents who'd done nothing to deserve this terrible situation, which explained why we were all gathered there, while the family grieved alone.
When I returned to Mary's room, the creases around Tom's eyes seemed to have deepened. It was as if he'd aged in the past few minutes, almost like he was trying to accelerate time so that his children would be old enough to survive.
“So you're sure there's no chance they'll make it,” he said. “Not even one of them.”
“I'm so sorry, Tom.”
He stared straight ahead, as if he could see through me past the door and into the operating room across the hall. As if he could see what the future held, and he wasn't about to turn away.
“But if we don't try—” Mary began.
“We'll keep them comfortable, I promise you that.”
She kept going, as if I hadn't said anything. “They won't have any chance at all.”
Every parent has to let their child go someday, but it should be decades down the road after you've taught them all you know. I couldn't explain why my kids were safe at home and probably had a great many years left, while Tom and Mary's only had a little while.
“That's right,” I said.
Mary turned away from me and looked into her husband's eyes. “We need to talk about this.”
I'm ashamed to admit it, but I was glad for the cue to leave that room of overwhelming sorrow.
I couldn't bear to go back to the conference room, where everyone else was killing time until they had to gown up for delivery. So I sat alone at the far corner of the nurses' station, staring at Mary's contractions come ever more frequently. I thought about calling home to check on the kids, but by that point they were probably already in bed, if not quite asleep. More than that, it would have felt callous to reassure myself of the undeserved joys of my life, when for Tom and Mary there was no refuge.
Eventually I couldn't wait any longer.
“We've been talking,” Tom said as I walked through the door. Beside him Mary was breathing through pursed lips, trying to blow away the pain. “And if there's any chance, we want them to have it.”
“I know,” I said, realizing I'd probably say the same thing if the roles were reversed.
In that moment I thought of all the numbers conveniently collected in that easy-to-use database. I remembered my palliative care training, about what words to say and the ones you're not supposed to. But Tom and Mary had already heard the data and the empathic statements. They needed something else.
I sat in the chair that Mary's mom had occupied earlier in the night, and leaned forward with my elbows on my knees. I looked straight down, though, because I was afraid of what I'd see in Tom and Mary's eyes as I told them we couldn't save their children.
“I would give anything to change things, but no matter what we do, your babies are going to die. And if we keep to the current plan, as soon as they're born they're going to have tubes put in their throats and in their belly buttons, and then they're going to be whisked off to the NICU. They might survive for a few hours or even days, but not longer than that.”
I'm pretty sure Tom and Mary were crying, and I know I was. Up to that point I'd just described the situation a little more boldly—like by using the “D word,” as I'd been taught—but they'd heard it all before. The feeling in the room was the same.
In that moment I was struck by how, for all our emphasis on “reframing”—shifting from negative descriptions of what we want to withhold (like CPR) to positive descriptions of what we hope to provide (like comfort and dignity)—words often remain so generic as to be meaningless, especially when compared to the tangible reality of three tiny babies about to be born.
Each of my kids had been born on that same floor, perhaps even in that very room. And now they were nestled safely at home, where they could stay as long as they needed, until they were ready to make their way in the world. Finally looking into Tom's eyes, I felt powerless and furious and crushed, and the only language left to me was not that of a palliative care doc, but that of a father.
That's when I uttered a phrase I'd never said—hadn't even thought of, truth be told. It was almost like someone was cuing me from offstage, prompting me with words that were not my own.
“If we try to resuscitate them, they're going to die in an incubator in the NICU. But if we focus on comfort, you'll be able to hold them for their entire lives.”
I don't remember what we said after that, but it wasn't very much. It probably involved some combination of silence and nodding and a promise from Tom and Mary to consider what I'd said.
What I do remember is that the room felt different. It was as if that one phrase—hold them for their entire lives—had turned around the terrible question Tom and Mary were wrestling with, allowing them to see it in a whole new light. It tapped into a primal urge to protect your children at any cost, through any sacrifice. Their children were yet to be born, but Tom and Mary were already parents, and no matter what they decided—and no matter how long their babies lived—the only thing that was certain was they loved their children and were trying to keep them safe.
Tom and Mary had always known there was something to be gained by resuscitating—the slimmest chance at life for their babies, and reassurance for themselves—but now they could see that they'd lose something, too.
Out in the hallway I passed the three neonatal teams as they strode purposefully toward the OR. It wouldn't be long now.
I probably should have stayed, but it felt like I'd done all I could and the rest was out of my hands. The resuscitation tables were set up, and the comfort care order sheets were available if there was a change of plans. I didn't live that far away, which meant I could get back in a hurry if needed. Right then, though, I needed to get home.
Everybody was asleep by the time I got there. I nuked the bowl of stew my wife had left in the fridge for me without bothering to stir it halfway through, which meant it was warm on top but cold inside. I ate on, though, less out of hunger than a desire not to hurt her feelings. I knew she'd ask me when I slipped under the covers how things had gone at the hospital, and that I'd answer in generalities. No names, few details. Less out of concern for confidentiality than because she doesn't need to be reminded of all the things that can go wrong in the world.
That's when my pager went off for the second time that night.
“Change of plan,” said the same resident who'd paged me before. “The parents say they just want comfort care.”
Normally I would have commented on her use of just, but not that night. I simply took a deep breath and thanked her for letting me know.
Before going to bed I made my rounds, only this time instead of standing on the threshold, I stepped inside and kissed each of my kids on the forehead. They didn't stir, and I doubted they'd remember in the morning. But I still treasure that memory of holding them safe and close, when not every loving parent has that chance.
Tom and Mary's babies were born right around that time, and they were dried and warmed and cuddled. There were no catheters or tubes or compressions. They lived for 23, 31, and 42 minutes, respectively, a precious instant on what should have been a long, rich journey. I never asked which of those times belonged to Ethan, Amelia, and Thomas, because it didn't really matter. I knew that their mom and dad held each of them for their entire lives, and that's what every parent dreams about.