An infant made my medical training feel worthwhile

As an intern in the neonatal intensive-care unit (NICU), I am one of several doctors who rarely see or touch the tiny patients we treat. We sit in a back room off a distant hallway, far removed from the babies, reviewing lab results and blood gases on the computer. Much of the time I feel like the Wizard of Oz, controlling a marvelous machine from behind a curtain.

The only uninterrupted time I have with my patients comes at 5:30am, during pre-rounds, when I hurriedly examine my ten small, complex charges. This is the most rushed part of the day, but these are also the rare moments that I actually spend with a patient.

For the past few days, I have been pre-rounding on Brooks, a baby with Zellweger syndrome, a disorder in which the body’s cells cannot properly process fats and so cannot maintain a functional nervous system. It’s the first disease I’ve encountered that we have no way to even attempt to treat.

In some ways, caring for Brooks can be a relief to the residents (including myself), because with the other patients there is so much to do, to remember, to follow, to test.

On rounds the other day, I actually found myself saying, “Oh, that room is easy. Brooks is doing great.”

No one raised an eyebrow. But I suddenly realized my unbelievable mistake.

By “doing great,” I’d meant that there was nothing to do for him — that I had one patient who didn’t need transfusions or compressed feedings. He doesn’t need his drug levels checked or his vent settings changed. He lies there each morning, with wide eyes and thin arms and legs, taking shallow breaths with a little nasal cannula in his nose. And he is no work for me.

Because he is dying, slowly.

Brooks has been here for a few weeks. He has never merited much discussion in the busy place that is the NICU; unlike the other babies we work so hard to save, he has no hope of going home to a happy life with his parents.

After a few days of watching Brooks and his parents, I realized that he deserved special attention, if I could ever spare the time — and that my only chance would be in the middle of the night.

So last night, during a twenty-four-hour call day, I made it my goal to hold him. I’d had a long dream the night before about trying to take care of him, to keep him warm when he was shivering. And all I wanted to do in my twenty-four hours of work was to hold him.

I mentioned it twice to my senior resident as we scurried from one task to another. She barely acknowledged my plan, but she heard it.

Around midnight, I asked his nurse, “Is Brooks awake? Do you think he needs someone to hold him for a bit?”

“No, I don’t believe he is,” she replied tersely. “Let him rest.”

I didn’t want to cause trouble and wake a quiet baby, so I didn’t pursue it.

Sitting back in our room, however, I realized something obvious but still shocking: little Brooks doesn’t cry.

So I returned to Brooks’ bedside. There he was, eyes wide open, staring at the bars of his crib. Not crying.

I didn’t want to cause a commotion with his cardiac monitor wires and nasal cannula and feeding tube, so I started talking to him.

“Hey, little man. Are you sleepy? I hope you are feeling cozy in that big crib tonight.”

A different nurse walked in. After studying me for a moment, she said, “Some children in here just touch you, don’t they?”

I told her that I had dreamed about Brooks. “He’s certainly touched me,” I said. Then, like a little girl who’s just become a big sister, I asked, “Do you think I could hold him?”

“Of course,” she said.

Even though I’m a doctor, I hesitated to disturb his tangle of wires and tubes; I asked her for help.

She pushed up a rocking chair, and I sat down in it, realizing that I must look like a mother visiting her baby in the ICU. I felt awkward sitting there, but I sat anyway while the nurse readjusted the tubes and wires and wrapped Brooks up in her arms.

She placed him in mine, and I began rocking.

For an hour I rocked, talking to him. He stared with eyes that might be unseeing, which made them even more mesmerizing and heartbreaking. He took tiny, labored breaths, like an old man with emphysema, and every few minutes he took a shuddering breath, as a child does at the end of a long bout of crying.

I told him not to worry. He couldn’t position his head or arms or legs, so he lay there in whatever pose I held him in. My arms were aching from trying to hold him as comfortably (for him) as possible.

A few times I heard the overhead page alerting the residents about some request — and each time the speaker added, “Not an emergency.”

Since these tasks were simple, and my senior resident and I were both awake, I let her respond to the calls. I called her from my cellphone to let her know where I was and went back to holding Brooks.

I repeated his name, telling him what a good boy he was. He looked so tiny and so crumpled in my arms, he reminded me of my Raggedy Ann doll at home, worn almost flat from too many years of sleeping with me.

Finally I returned to the workroom.

“Well, did you enjoy your bonding time?” my senior resident asked, her tone slightly patronizing.

“Yes, I did,” I said, and started to explain. But I realized she was no longer listening.

***

Not long after that night, Brooks went home, where he died under hospice care.

His parents probably believe he’s been forgotten by the rest of the world, but I will always remember him. I can still feel his weight in my arms, see his tiny face and remember his quiet little room in the corner.

It may sound odd, but this baby made a real difference to me and made my medical training feel worthwhile. Not because I got a chance to do a lumbar puncture or an intubation on him, but because I simply had the chance to hold him. This was something that no nonmedical person besides his family members had the privilege of doing. But I did.

Nelly Schottel is a pediatrician. This piece was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission.

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