By Diana Robinson

My husband Jeremy and I stood just inside the entrance of the NICU, between the front desk where we used to get our bright orange stickers, permitting our entry as proud parents of Reed Robinson, Room 363, and the washing station, where we meticulously washed away any germs that could harm him.

It had been about a week since Reed took his last breath in my arms and it took all the energy I had to walk through the doors of the hospital, to get “visitor” stickers, to make my way to the elevator and push the “3” button, and to enter through the glass door of the NICU, because this time, unlike every other time I had made the trek, my baby was not waiting for me on the other side.

I called ahead to let the NICU know Jeremy and I were coming to pick up the milk I had pumped over the past month, the molds that were made of Reed’s hands and feet soon after his death, and any other items of Reed’s that we had left behind. I expected the nurses to greet us and to have everything ready for us when we arrived.

Instead, we stood at the entryway of the NICU, as nurses, some of whom actively cared for Reed, quickly walked by us, diverting their eyes.

We stood at the entryway of the NICU as the young resident physicians, who were there when Reed received the devastating diagnosis of necrotizing enterocolitis, who were in the operating room with Reed as he fought for his life, and who witnessed our raw grief just days before, stood five feet from us, chatting with the woman at the front desk, completely ignoring our presence and our pain.

We stood at the entryway of the NICU as the charge nurse failed to offer condolences and told us coldly that she did not know where the molds of Reed’s hands and feet were, did not know what happened to the octopus whose tentacles Reed loved to hold, and did not know the location of the blanket that swaddled Reed on the best night of my life.

We stood at the entryway of the NICU as one of the neonatologists, who bonded with Jeremy over his first career as an Engineer, saw us and turned away.

We stood at the entryway of the NICU, a place we once called home, now a foreign land. Nurses we once called friends, now strangers. We were outsiders in a place we once belonged. The moment the nurse carried Reed’s body out of the NICU, headed for the morgue, we had lost our right to be there.

I knew it would be difficult to return to the NICU, the only place where Reed lived and where he also died, but I thought it would be different. I thought it would be hard because the NICU staff were the only people besides Jeremy and I that knew Reed. But, instead of being greeted with compassion, concern, and empathy, we were met with apathy, coldness, and avoidance.

Just as we were about to leave the entryway of the NICU for the last time, our favorite nurse, Lauren, saw us and stopped us before heading to the delivery of a premature baby. She hugged and told us with tears in her eyes and her voice breaking that she was so sorry, and that she loved our sweet boy.

While we were waiting for the elevator, one of the respiratory therapists, Amy, stopped us, gave me a hug, and said she loved taking care of Reed. We thanked Lauren and Amy, but I doubt they realize how much their words and actions meant to us. A small act of humanity is sometimes everything.

A few days later, the social worker for the NICU called me and I told her what happened on our return trip. She apologized, promising the nurses would be required to attend bereavement training. I believe she will follow through on her promise. At the same time, it is distressing that we need training to know how to be kind, compassionate humans in the face of loss, that as a society, we are so woefully inept at facing discomfort, grief, and pain. While we strain our necks to get a better look at the mangled vehicles on the side of the road following a fatal crash, we cannot bear to make eye contact with the bereaved husband following that same accident. It’s even worse when a baby dies, when the so-called “unimaginable” happens.

Because of COVID-19, we were forced to limit the funeral to immediate family. We didn’t get the in-person hugs, contact, or condolences that would have been possible in the absence of a global contagion. I worry that because my pregnancy and Reed’s life and death were experienced entirely in isolation, it will be easy for people to forget he existed.

In the aftermath of Reed’s death, there were certain people I expected to show up who did just that. There were people I do not know very well who made gestures so unexpected and so kind, they brought tears to my eyes. And then, there were people whose silence was deafening. I understand their silence was not likely malicious. Perhaps they didn’t want to say the wrong thing or make us sad. Maybe because of their own discomfort, they failed to act. They didn’t want to face the fact that babies die, and that if my baby died, theirs could too. Maybe they thought their absence wouldn’t be noticed, but their absence hurt infinitely more than wrong words said with good intentions.

Because of Reed’s death, I have vowed to be better. I am sure there have been times in my life that I have fallen short. But now, after losing Reed, I am committed to reaching out, sending cards, making donations, and sitting with friends, knowing how much those gestures can be a lifeline. Sometimes an ounce of compassion feels like a waterfall.

Diana Robinson is a patient advocate.