More than 63 years later, a young mothers sorrowful appeal still haunts me. I was a second-year nursing student assigned to a toddler unit at the Babies Hospital at Columbia-Presbyterian Medical Center (now Morgan Stanley Children’s Hospital) in New York City.
The instructors would encourage us to interact with our young patients after we completed our patient care assignments. We happily engaged them in activities such as storytelling, singing and reading, and, if permitted, brought them to the spacious playroom for other activities. This was a fun experience for the student nurses and our small charges, a time when we were free from the stress of administering blood tests and treatments.
Back in the 1950s, hospitalization lasted weeks before discharge and, sadly, some children remained hospitalized indefinitely. We cared for patients with cystic fibrosis, TB, meningitis, nephrosis, leukemia, Tay-Sachs disease, juvenile diabetes, sickle-cell anemia and other, then-incurable disorders. Many children died, sometimes in the caring arms of the nurses on duty.
On visiting days which were limited to twice a week, a nonsensical rule of the time we students would mingle with parents and be prepared to console our small charges after they left. This was an era long before all-day visiting on pediatric units. Rooming-in still was light years away.
A day I shall never forget occurred when the mother of a child born with familial dysautonomia asked a group of us to step into her 18-month-old sons cubicle. Children with this genetic condition suffer from dysfunctions of the autonomic and sensory nervous systems because of the incomplete development and loss of certain nerve cells, resulting in an incomplete development of nerve fibers. Typically they have poor muscle tone, blotchy skin, difficulty in maintaining body temperature and the absence of tears when crying. At that time, most children with the condition would not reach their fifth birthday.
With tears rolling down her cheeks, the mother pleaded, I know that Jason is not as cute and appealing as some of the other children on the ward, but he is my beautiful baby boy and he needs the same love and affection as do the others. When Im not here with him, I ask if you students would pick him up and play with him, too. She said she was aware of his long-term prognosis, which was grim.
We stood somber and silent for long moments as we surrounded Jasons crib. No one spoke, for her words had left us feeling shameful and sad. What was lacking in our youthful compassion? We filed into the hallway, each resolved to examine our behavior and increase our sensitivity to patient needs. I vowed to remember this mother and the hard lesson she taught us all. It was a lesson more profound than anything we might have read in our textbooks or heard in lecture halls.
Years later, I continued practicing pediatric nursing in a much smaller community hospital. My role as clinical coordinator often involved orienting new staff and affiliating students. Without fail, I included a teaching moment from my own student experience and repeated those heartbreaking words spoken by that anguished mother back in 1950. Judging from the students expressions, the story still packed a wallop and even brought tears.
Then and now, the neediest child on the pediatric unit need not be the least physically attractive or even the sickest. He or she may be the loneliest or the most worried and troubled. Our role as pediatric nurses remains to identify and respond with love and compassion to the least of our brethren.
To Jasons mother: Today I am 82, and I will never forget the lesson you taught us.