Excerpt: “Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul” - Winner of the CWA Book of the Year Award for Traditional Non-Fiction

By Robert Macauley

Context: The chapter titled “When hello means goodbye” describes two cases where parents made incredibly difficult decisions for their babies, who were born with serious medical conditions. The second case begins on a winter Friday night, when I’d just gotten home from work. Then my pager went off, informing me that a young pregnant woman (Mary) had gone into labor four months early. Upon returning to the hospital and meeting with her and her husband (Tom), I learned they’d already named their triplets Thomas, Amelia, and Ethan, and that they understood the dire prognosis. I then stepped out briefly to speak with the neonatal team, who confirmed that there was no chance of babies that premature surviving. They couldn’t bear to say no, though, when Mary and her husband (Tom) were begging them to try.

I returned to Mary’s room, more because I’d promised I would than because I knew what to do or say. The creases around Tom’s eyes had deepened, almost as if he’d aged in the past few minutes in a desperate attempt 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 as I sat down in what had been Mary’s mother’s chair before she couldn’t take it anymore and had to step out. “Not even one of them.”

“I’m so sorry, Tom.” He stared straight ahead, as if he could peer through me 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 said, using another phrase the textbooks recommend, which after a few years of practicing palliative care was starting to come naturally. “I can promise you that.”

She kept going as if I hadn’t said anything. “They won’t have any chance at all.”

All parents have to let their children go someday, but it should be decades down the road after we’ve taught them all we know. And we should be the ones to leave, not them. I couldn’t explain why my three kids were safe at home and, hopefully, had many years ahead of them while Tom and Mary’s only had a little while left.

“That’s right,” I said, realizing I’d probably say the same thing as Mary if the roles were reversed.

The three of us sat in a heavy silence. Tom and Mary already knew the numbers conveniently collected in an online database, and they’d heard all our empathic statements. They needed something else.

“I would give anything to change things,” I said, leaning forward with my elbows on my knees, “but no matter what we do, your babies are going to die. And if we stick with the current plan, as soon as they’re born, they’re going to have tubes put in their throats and IVs placed 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 than I had before, like by using the “D-word.” They’d heard it all before, though. The feeling in the room hadn’t changed.

In that moment, I was struck by how, for all our emphasis on “reframing”—shifting from negative descriptions of what we think should be withheld (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.

That’s when I uttered words that didn’t come from any textbook. I’d never said them before. I hadn’t even thought of them, 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 your babies,” I said, “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 much. It probably involved some combination of silence and nodding and a promise from Tom and Mary to consider everything we’d talked about.

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 whatever 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 certain thing was that they loved their children and would do anything 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 that they never gave up. But now they saw that there was something to lose, too.

Out in the hallway, I passed the three neonatal teams as they strode purposefully toward the OR, where the resuscitation tables were prepared. Soon Mary, whose contractions were getting stronger and closer together, would be wheeled in.

It would take time, though, to deliver three babies, even more to insert breathing tubes and umbilical catheters and transfer the triplets to the NICU. Once we started down the path of intensive treatment, it didn’t make sense to consider changing course until we had relevant data like blood tests and X-rays, the results of which wouldn’t come back until morning.

At that moment, I had an overwhelming need to see my own three kids, who suddenly seemed incredibly fragile. I knew that I could return immediately to the hospital if called, but before leaving, I—in a hopeful and surely pointless action—clipped comfort care order sheets to the front of the three waiting charts, waiting to be signed if the parents changed their minds.

Everybody was asleep by the time I got home. I nuked the bowl of stew my wife had left in the fridge without bothering to stir it halfway through, which meant it was scalding on top but cold in the middle. Even though I wasn’t particularly hungry, I still ate it all, not wanting 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 didn’t need to be reminded of all the things that can go wrong in the world.

I was just turning off the kitchen lights when my pager went off again.

“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,” which seemed to suggest that comfort care was easy or somehow deficient. (I often say that palliative care can be just as intensive as ICU care, just with a goal of comfort rather than prolonging life.) But not that night, not after all she and the team had gone through. I simply took a deep breath and thanked her for letting me know.

Before going to bed, I made my usual rounds, only this time, instead of standing at the threshold, I stepped inside each room and kissed each of my three kids on their forehead. They didn’t stir, and I doubted they’d remember in the morning. But I still treasure the memory of holding them safe and close when not every loving parent has that chance.

Tom and Mary’s babies were born around the time I closed the last bedroom door. They were dried and warmed and cuddled. There were no catheters or tubes or chest compressions. They lived for twenty-three, thirty-one, and forty-two minutes, respectively, a precious instant on what should have been a long journey. I never asked which of those times belonged to Thomas, Amelia, and Ethan because it didn’t really matter. I only knew that their mom and dad held each of them for their entire lives.