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 5:30 am, 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.
About the author:
Nelly Schottel is a pediatrician who is spending this year raising her infant daughter, Nora, while her husband finishes his own residency. She first started writing about the practice of medicine in a seminar at the University of Virginia School of Medicine. “During the course of my residency, I found that, with increasing competence and confidence (and seniority), it was possible to spend more time with patients and their families. That is why I love general pediatrics and really why I went into medicine in the first place.”
28 thoughts on “Bonding Time”
Thank goodness for doctors like you who go against the general training that doctors must be DISpassionate instead of warm and human with their patients. Touch is important. Touch promotes growth in healthier children who are able to survive. Touch in adult patients offers comfort and the knowledge that the doctor is listening and sees them for their humanity, not their illness.
Thank you all so much for reading and commenting. It has been such a pleasure to read these and learn from them. And I am so happy to know that some families out there might get comfort from this experience. Having a baby of my own has only made more clear to me how powerful work in a place like the NICU can be, if you let it touch you — though I realize that is the hard part given the pace and demands of modern medicine. In any case, I will carry your comments with me when I return to practice hopefully in the coming months!
Dear Dr. Schottel, Thank you so much for having taken the time to hold Brooks and for telling us about it. When my son Silvan was alive, only nurses took time to hold him. How much that mattered to us. I’ve written about the importance of holding a dying baby in my memoir Holding Silvan: A Brief Life. I just thought you might be interested in hearing a parent’s perspective on how medical staff can be most helpful in the case of terminal babies. Best, Monica Wesolowska
This was a beautiful moment and a beautifully written story. Thanks for making my day! You sound like someone who will keep expressing your human spirit throughout your career, and I hope you will keep writing and sharing your kindness and wisdom. Best to you and your patients. Kendra Peterson
Staying in touch with your humanity is as important as being technically and medically proficient. This is exactly what medicine needs, MDs who can be human, empathetic and caring toward their patients. Good for you. Thank you for sharing this relevant and revealing missive.
cd says it all. And if I know cd, she speaks from experience.
Sometimes it is more important to be with the patient than to be a medical provider to the patient. This was a beautiful reminder; thank you for sharing for this.
You are already a fine human being — keep up the good work.
Nelly, I do hope you sent this to Baby Brook’s parents. I am sure they will be moved by your caring and to know that their child was held by you. If you didn’t send it, it’s not too late.
What a great story. A poignant reminder that caring is more than technology AND that touching between physicians and patients goes both ways.
Dear “Pulse” – Thank you for creating the opportunity and space for Nelly Schottel and all the other “Nellys” to share their personal experiences at your superb table. I especially like that you serve this delicacy only once a week. That allows your faithful readers to save them until they can quietly read them without getting behind or having to skim them quickly. At least that’s how it works for me.
You area blessing to all you hold dear!
You are a fine doctor!
It’s not easy to maintain that degree of generosity and humanity during one’s medical training. I salute and thank you, and hope you will always remain this open, and hope that many others will follow your example.
Dear Dr. Schottel,
I really liked your story. Spending a little extra time with patients to focus on them as people can be a hard thing to remember and make time for, but it’s very rewarding. I’m in the middle of my IM residency and I see how spending that extra time can transform how we relate to patients from a list of checkboxes into something much more meaningful. Thank you for drawing attention to that.
Hey Nelly, really connected when you said, “What a good boy he was.” I used to and still do today tell my boy, ‘You’re such a good boy Evan.” Evan was terminal like Brooks and died 4 years ago. Thanks so much for telling us all about the meaning of, “Voices from the heart of medicine.”
A lovely touching story that shows what a true learner this doctor is, finding the lessons needed
A very moving story, Nelly. It stimulated me to think back on my 35 years of practicing family medicine. What has moved me throughout all that time has been those rare moments when I have had the time and the courage to connect, human-to-human, with my patients. This requires forgetting the teachings of professors who still preach emotional detachment as the only way to survive the tragedies of our interactions with patients when just the opposite has been true for me. It has been my emotional connections and the joys they bring along with the sadness that has made me feel my work has been worthwhile. There are many people around who can do doctoring but far fewer who can be healers. We should continue to strive for the later which cannot be done without the human connection you made. I love this story and will save it to share with students and residents in our program. Thank you for sharing it and writing it so beautifully.
Thank you, Nelly, for observing and recording this exceptional, and yet ordinary, day in medicine.
I like the way that you portrayed the prickly one who disapproved of your need to hold baby Brooks. I am grateful too, for the presence of the nurse who understood and helped you and for the insight this experience gave you — a glimpse into the world of the parents of NICU babies and a glimpse into Brooks’ reality.
Very graceful of you to share.
Following your heart (and important dreams) are keys to being a healer.
Dear Dr. Schottel:
What you did can’t be praised enough. I’m going to assume that you gave Brooks a measure of peace. Surely it counts twice as much because he could not and did not have to ask for it.
We have known for decades how holding a tiny one, sick or well, helps. Unfortunately, some (even some in Washington) forget that.
I salute you – medicine is lucky to have you.
I would only hope my male residents would feel the same as Nelly and respond similarly.
Beautiful and very topuching. Thanks for sharing your humanity
Beautiful and touching story. The author is a very special Person . We need many more MDs like her!
Nelly, I think in the end it’s our human presence with each other that carries forward the healing in life, no matter where we are in the vast span from birth to death. Thank you for this story.
Nelly, Thank you for your beautifully written article on compassion and caring from the medical profession. In my work, I often hear the sad stories of the cold side of medicine and leaving patients and families at an arms length never veering over to the personal touch side of medicine, as you have.
Many of the parents that I work with will tear up after reading and feeling your compassion written here as they imagine that there was an angel like you who came to their child’s bedside in the middle of the night to comfort them. My only hope is that you keep your gentleness as you proceed with your career and never forget Brooks and all of the other children that you see beyond the stethoscope. Teach your seniors and residents what medicine is all about.
A beautiful, sad, memory. Thank you for your caring and for sharing your heart with the rest of us.
Loved your story and I know that baby needed your love. Please call and tell his parents how special he was to you and how you reached out to him so they know his life touched other people too.
Keep on touching and caring.
Such a Beautiful story! Nelly I love you!
NELLY This world needs many many more people like you …….your compassion is amazing !