Navigating Grief in the NICU

Grief in the NICU

I remember my first day on the NICU like it was yesterday. I walked the floors filled with so much self-doubt and fear, afraid to make a practice of people’s lives and to perhaps cause irreparable harm that they would spend years, maybe even a lifetime, trying to undo. Holding the current census in my hand, I looked for the patients who had been there longest in order to determine who would need a visit soon.

Then I stopped by the nurse’s station to get their assessment of the patients. When I introduced myself as the new chaplain, the nurses huddled around to fill me in on the patients in highest need. One nurse pulled me aside apprehensively to share a secret about one of these patients that she neither wanted nor knew how to keep inside.

Talking about Pregnancy Loss

There was an African American family down the hall who had just given birth to an infant expected to die within a day. The mother had known for many months that the child would not live long after he was born, but she had kept this a secret from the child’s father in order to spare him further pain. The medical team and the mother’s sister had also been aware of the child’s viability for months, and now the nurses were finding it difficult to reach the child’s father, because the fact that they had been withholding information from him made it difficult to support him.

When I walked into the room, the mother was sitting in a chair holding the baby, who was connected to all sorts of machines to keep him alive. She didn’t look up at me, she just kept staring at her child, holding his hand, knowing that each moment they spent together might be their last.

When the Chaplain Arrives

I reached into the corner to the hand sanitizer dispenser. I immediately looked down to see another woman—the mother’s sister, sitting by the door. She stood up immediately to face me, blocking my access. I looked across the room and saw the child’s father sitting in the back, teary eyed. He smiled weakly at me. He was isolated physically and spiritually in his grief. From a distance, he watched his wife hold their child for the last time.

I was so overwhelmed by all that I was experiencing and perceiving that I had forgotten to greet anyone as I entered. The mother’s sister stood in front of me, waiting, as I stumbled to form words.

“I’m Breeshia, just a chaplain stopping by to introduce myself and see …”

Chaplain Rebuffed

I wasn’t able to finish my sentence before the sister cut me off. “We don’t need you. Thanks.” It was clear that she was simply trying to protect her sister’s time with her child, but I wanted neither her defensiveness nor my fear to get in the way of this family getting something that they needed. I moved my head past the sister’s shoulders and directed my next question to the mother and father, making a strong effort to hold eye contact with the dad.

“Mr. and Mrs. Thompson, would you like me to come in to offer support?”

The mother glanced at me briefly with gratitude in her eyes before looking down at her baby again. “No, thank you, sweetheart.” I looked at the father again, the tears welling up in his eyes. I wanted to push past the sister and get to him in the back of the room, but I felt more than powerless—I felt helpless. His eyes told me that he needed someone in this moment, but his mouth did not want to contradict his wife. His voice shook as he spoke, “No, ma’am. Thank you.”

As I left the room, the sister resumed her post by the door.

I had failed.

Child-Loss Brings Unfathomable Sorrow

On some level, each of us knows what it means to dream. We also know the disappointment of watching a dream fall down midflight. To lose a child, though, is to endure such a profound loss that it beggars description. There is an unfathomable sorrow known only by those who have experienced it. No words can capture what it means; there is neither peace nor comfort to be found in this suffering.

The loss of a child leaves one’s world utterly broken and incomplete. And so, we are left to wonder how we take these mosaic pieces and create an image of meaning? Because children, their lives—along with the dreams they represent, no matter how young or small—matter deeply. With inexplicable power and unconditional love, the universe and all its possibilities are what we carry in our wombs and hold in our hearts when we imagine a child. So young, and yet their lives capture the whole of time. And so their death sends our universe into irreconcilable chaos.

Even Chaplains Feel the Loss

To this day, I haven’t gotten used to the anxious desperation of nurses relieved to see a chaplain arrive. They have patients who need “fixing.” It was as if we possessed an otherworldly ability to solve the powerlessness and discomfort associated with illness, death, and grief. This was never more true than on the NICU. I was still learning ways to replace the nurse’s expectations with what I understood my role to be. I was a facilitator, a witness, a support system, and a guide for families.

In many ways, I was as much a support for the medical team as for our patients. I was just as in danger of falling headlong into their grief with them. I had a fear of disappointing them and a desire to “save” them from their own bereavement. And I still learning to navigate the grief of everyone on the floor, including my own.

Learn more about Breeshia at www.breeshiawade.org

Breeshia Wade

Breeshia Wade holds a BA in Comparative Studies in Race and Ethnicity from Stanford University and an MA in Religious Studies from the University of Chicago. She completed Upaya Zen Center’s two-year Buddhist chaplaincy program. Wade served as a hospice and palliative care end-of-life caregiver in Los Angeles County. Over the past five years, she has supported people through grief and transitions as a birth doula and a lay-ordained Buddhist chaplain working in jails, on the mother and baby units of hospitals, and in people’s homes. Wade uses her practice as an end-of-life caregiver to encourage those who are not facing illness, death, or dying to be open to what grief can teach them about relationship, life, failure, sex, and desire. She wishes to expand the world’s conception of grief beyond concrete loss and to call attention to the numerous ways our experiences of grief impact the way we (mis)understand power, craft self-image, and approach boundaries, conflict, and accountability. Breeshia is the author of "Grieving While Black: An Antiracist Take on Oppression and Sorrow."