Julianna Paradisi, RN, OCN, is an oncology nurse navigator and writes a monthly post for this blog. The illustration below is hers.
Peds Ward (2008)/charcoal, graphite, flash, and acrylic/by Julianna Paradisi
Working in oncology, the topic of whether it’s crossing a boundary for nurses to attend the funeral of their patients comes up. Sometimes, however, we’re carried across that boundary by our heartstrings. The first patient funeral I attended was that of my first patient.
During Jack’s short life, he was the first assignment of many a new nurse on the pediatric unit where I was hired as a newly graduated nurse. He had lived in the hospital his entire life.
Jack was nearly ten months old when we met. Born with a congenital illness requiring multiple surgeries, he failed to thrive. A nasogastric tube snaked through his nose into his stomach so he could conserve the calories burned eating from a bottle or spoon. As Jack’s nurse, I mastered the skill of nasogastric tube feedings.
Most parents bond with their chronically ill babies, but it takes a big commitment on their part. Babies like Jack do not look like the pictures of healthy babies in magazines. They are cloistered in an isolette and connected to machines by feedings tubes and IV pumps. Weeks go by before they can be held.
Jack’s mother had all but abandoned him, a phenomenon sometimes occurring when children begin life with extended hospital stays. Susceptible mothers simply stop coming to visit. Phones calls to Jack’s mother were rarely returned; if they were, she vaguely promised a date and time for visits, but rarely showed.
Occasionally, a caseworker would locate her, and explain that Jack would be put into foster care for abandonment. This would prompt a string of visits. She’d bring a toy, and talk about taking Jack home. She learned to feed him by holding a 60 cc syringe skyward as formula trickled through the tube taped to the side of her baby’s face, and into his stomach. I wonder if she wished she could simply hold Jack as he bottle-fed, the two of them gazing into each other’s eyes, the way mothers expect to do?
But she was young; it was too much for her. After a few visits, she’d disappear again. In her defense, no other family visited in her absence—a clue to her lack of social support.
In this manner, Jack became the “child” of the pediatric nurses, raised by a tribe of women. We took turns caring for him. Day shift nurses bathed him, dressed him in clothing they bought, and stimulated Jack’s mind with brightly colored toys that rattled or squeaked. Night shift nurses bathed him again, dressed him in footed fleece pajamas we bought, and read bedtime stories while rocking Jack to sleep. He loved music and singsong rhymes. His dark eyes fought to stay open in his pale face until defeated by sleep.
Attempts at feeding Jack met with resistance. The effect of long-term use of an NG tube was Jack’s aversion to putting anything in his mouth, including food. To maintain nutrition, his doctors were forced to surgically insert a gastric tube into his belly. Bolus feedings caused Jack to vomit, so they were converted to continuous drip. Clamped to an IV pole, a feeding pump followed Jack wherever he went, down the pediatric unit halls.
Jack never gained enough muscle strength to learn to walk. At the nurses’ station he watched us work, seated in a walker on wheels he was never strong enough to move on his own. Often, he was sick.
At Christmas, Jack’s room was a kaleidoscope of gifts. Every pediatric nurse with young children brought them to visit, bearing gifts they’d wrapped themselves: “For baby Jack, spending Christmas in the hospital.” For many, it was their first opportunity for empathy.
Time went by, and no one claimed Jack. His condition stabilized, he began to gain weight, and discussions about his discharge began. None of us could bear the thought of Jack living with strangers in a home for medically fragile children, away from us, his family.
Not surprisingly, a nurse stepped up. She decided to become Jack’s foster mother. She began the rigorous process required by the state. She decorated a room for Jack.
But it was not to be. Jack’s bowel, never reliable, began to leak, and he became septic. He was transferred to the pediatric intensive care unit, where several days later he died. Attempts were made repeatedly to contact his birth mother, but by the time she arrived, he had been transferred to the hospital morgue. Once again, she could only look, not touch, the baby boy she never really knew.
Jack was nearly two years old. There were no funds to bury him, so we, his nurses, his stand-in mothers, donated money for a tiny white coffin. We made posterboard displays of his baby pictures, and bought flowers for the chapel. The hospital chaplain gave a eulogy full of stories gathered from the nurses who knew him best.
Jack’s mother attended his funeral. She wore dark glasses, and cried quietly in the front pew of the chapel reserved for bereaved family, surrounded and comforted by pediatric nurses who had long ago crossed that border.
Wonderful post! I think many peds nurses may have a “Jack” or two in their past, I know I did. Also, as a peds onco nurse, I attended more funerals than I would have liked to, but it was always important to the family and to me to be there.
Thanks for reminding me of some bittersweet memories.
This is almost the exact same story of a young child I cared for one year of the two he lived. This young boy had a grandmother who came occasionally. The rest of his life was with the nurses. We really felt the loss when he passed away after a seizure. I was actually the senior nurse on and had to firmly remind the respiratory staff that he was not to be coded. This young boy not only had gastric feedings but was on the ventilator and had a tracheotomy. So lots of learning chances for the new nurses just after orientation. Always a good experiences for them as he was such a happy baby.