Medical innovations and the emotional labour of nursing
ROSEMARY THOMPSON reflects on the legacy of two young patients who were at the heart of pioneering work in the care of children with leukaemia.
In June 1977 I undertook my paediatric experience as a second year nursing student at the Westminster Children's Hospital and it was on Gomer Berry Ward that I was introduced to two extraordinary and remarkable individuals: a six-year-old boy and a 14-year-old girl. Both suffered from a rare form of leukaemia, the formal part of their treatments requiring barrier nursing.
My little boy was nursed in a single room and having "gowned up" we could enter this child's world. He looked, to me, very young for his age. At first glance his hospital cot resembled a boxing ring, padded on all sides with pillows. His mouth and face had traces of blood where, I can only imagine out of fright and frustration, he frequently flung himself against his nest.
Non verbal communication
His social isolation and resulting behaviour was a cause of great sorrow to me as a young nurse. I recall very little language that I could understand. Yet my growing relationship with him, especially at night during that difficult student placement, allowed me to recognise and understand his feelings and emotions.
Through patience and empathy his anger and frustration could often be placated. However, my own sense of hopelessness and, to a large degree, helplessness could not.
On reflection fellow professionals often gave mutual support. As part of the workforce we rarely had time to reflect on or express our fears. And yet that support could be extraordinary. I remember that the senior student nurse somehow found my telephone number and enquired whether I was "all right" after a particularly harrowing night.
The girl in the bubble
I also recall how my adolescent patient with leukaemia was nursed in the main Nightingale ward, which offered little privacy. She was a bright, articulate teenager and her world was a large plastic translucent tent, more like a "bubble", that had been constructed by the staff.
The sides of this tent had built-in pockets for gloved hands and a large pocket for headroom. While navigating all this, those of us who nursed her had to remember to engineer a supply of oxygen via tubing as we entered the bubble to prevent our own asphyxiation.
All nursing and medicine care was carried out by non-direct touch, which meant the absence of all human touch. Her devoted parents stayed next to her, only able to touch through plastic.
Frequently when my patient was distressed I would enter this tent, quite forgetting my oxygen tube, only to find myself faint and fighting for breath. Not surprisingly the teenager found this very amusing and together we would laugh at the absurd situation. She was a delightful person just a few years younger than me, full of life and hope.
Their influence lives on
She died a week after I left the ward while my little boy lived for another two years.
I later realised this was pioneering work, undertaken on a very busy medical ward, and it was in its infancy, but it led to greater success rates than could ever be imagined. What stays with me is the unique contribution both these patients made towards this success, and some 30 years after their deaths they have given hope to many more.