The unique pain and joy of celebrating Christmas with a child in the pediatric intensive care unit

In the days leading up to Christmas in the pediatric intensive care unit (PICU), medical teams work to send as many children home as they can. Kids should be with their people for the holidays. And it makes sense. But for parents of children receiving in-home care — parents like me — it can be a relief to surrender to the hospital’s siren song. For families like mine, the PICU can be a respite, especially during Christmas.

The nurses decorate the floors in an effort to make a place filled with monitors, ventilators, and hospital beds festive. No one believes in Santa in the PICU, but the nurses and doctors try to pretend magic and miracles are real. These efforts might seem futile, but the patients and their parents indulge this.

In Philadelphia, where I live, the whole city rallies around the Children’s Hospital of Philadelphia (CHOP) to take care of the families who will be in the hospital over the holidays. It is the child life specialists, who are a cross between social workers and art/music therapists, who are charged with helping children most directly. Child life specialists play board games with the children and get them crayons to make holiday cards. For my daughter Cal, who was paralyzed, feeding tube dependent, and nonverbal, the therapy dogs and the music therapists brought her the most comfort. After so many Christmases in the hospital, one social worker explained that hospital staff ask to work Christmas. I was astounded. She explained, “We see working Christmas as an honor.” It is something many of them feel called to do.

Then there is the food. On Christmas morning, volunteers roll around carts with coffee and hot chocolate and, if you get there early enough, doughnuts, and bagels. I would sneak out and feel the sun on my face while holding tea in a cardboard cup that was served with so much love and compassion by a stranger holding back tears at the sight of the mother spending Christmas in a children’s hospital.

All the people handing out blankets, cookies, scented candles, stuffed animals, and gift bags create a type of gratitude fatigue. Weary, underpaid staff who mop the floors and empty the trash offered their hugs and encouragement. A few who felt comfortable enough promised to go home and say a prayer for me and my child.

Most years, my daughter Cal got sick around Christmas. For Cal, a cold turning into pneumonia seemed inevitable; her fever would break, and we thought we might be OK. Then at 3 a.m. the monitors would start beeping because Cal was in acute respiratory distress. Over a decade of caring for Cal, who suffered from a degenerative neurological disease called leukodystrophy, my husband and I became skilled nurses.

The doctors trusted us enough to know that if we called, it was time to get admitted. Once, a doctor tried to cheer me up by reminding me that the PICU was like “concierge medicine”: One nurse gets assigned to two patients. In a fishbowl-like room called a pod, nurses stand watch, never turning away from the monitors. “Your child receives the best care there,” in the PICU, the doctor told me. “They can handle anything.”

The PICU is silent most of the time, free of the clank and clamor of other hospital floors. When the doctors and parents speak, it is in hushed tones.

We were the fortunate family who had insurance, child care, and flexible jobs, so Cal always had at least one parent by her side. Most families have jobs and other children to care for so the sick kids spend most of their time on their own.

Standing by Cal’s hospital bed, the nurses would say, “Don’t panic unless we do.” The only time they looked scared was a few days before Christmas when Cal was 8 or 9, as she coded. The usual routine of respiratory therapy was not working. Cal was struggling to breathe. The intensivist on call believed Cal needed to be intubated, but given the fact that she received hospice care, and my husband and I had signed a DNR, it would be my decision about whether to move forward with the code. I closed my eyes and did some version of a prayer and responded. “Yes, yes, do it. Do it.”

I tried to fall to the floor and weep. A nurse rushed to my side. At first, I assumed she wanted to comfort me. I was wrong. Instead, she said, “You need to calm down. Take a few moments to compose yourself.” The implication was my outburst was utterly inappropriate. It was distracting to the medical team and unsettling for the other families and patients on the floor. There is no crying in the PICU.

My daughter was getting intubated. A dozen nurses and some residents and interns (proper attending physicians don’t usually do a code in the middle of the night over the holidays) surrounded her bed, pulled the curtains, and started working over her to insert a central line, administer a paralytic, and thread a tube down her throat to get her oxygen. Because our hospital is one of the finest children’s hospitals in the world, it is also a teaching hospital; Cal’s crisis became a classroom. The maxim of medical school is “see one, do one, teach one.”

We were fortunate the intubation worked. The respirator got her through the worst of the pneumonia. After a few days, she was strong enough to breathe on her own. The same stony-faced nurse and doctor who had methodically and calmly overseen the code could not hide their relief at Cal’s recovery. Cal was even smiling and humming when her father and sister came to visit her the day after the extubation.

The attending beamed and said, “I have no idea how the X-rays I looked at could belong to the child staring back at me now today.” The attending embraced me. This was not the sort of doctor who got so emotional and did fist pumps. This is, after all, a place where death is proximate. The doctor understood he had not vanquished the enemy, he had forced it into retreat.

Cal’s survival that Christmas had been a genuine medical miracle. And everyone who had worked that week had been grateful to witness it.

My daughter Cal died four years later in 2022.

That first Christmas, I tried to run away from those memories, but this year I long to return to the PICU.

I want to offer my thanks to the doctors, technicians, volunteers, staff and nurses who cared for us. How I long to promise the terrified parents sitting at their children’s bedsides that no matter what happens, no disease will ever defeat their love for their children. And how I want to be around the children who spend Christmas in the hospital and tell them how they taught me the meaning of life and how to be brave.

Maria Kefalas is a professor of sociology at Saint Joseph’s University in Philadelphia and the founder of the Calliope Joy Foundation. Her most recent book is a memoir titled “Harnessing Grief.”