Editors note: This piece is a personal narrative and does not make a specific policy or ethical argument
It was a hectic day on service: there were codes, surgeries to be arranged, conferences to attend and prospective new hires to interview. I was navigating through parental and medical team questions and concerns when I saw a patient’s mother. She had the brightest smile on her face. She was singing to her baby very softly in her native language. I didn’t understand her words but imagined that they were blessings she was showering on her little baby who was sick and had been in the hospital for about 6 months, essentially its whole life. She was also observing all of us closely. She saw us stop at multiple bedsides and talk to parents. She saw parents pull out their phones and show some tests and ask us for clarification.
As a neonatologist at a busy academic center, I am accustomed to parents inquiring about every red arrow on the test result tab of MyChart. Parents can read the notes we write and often ask us for clarification, but this mom was different. Two days into my service block she had yet to ask me any questions. I explained to her the thought process and plans for the day. She would smile and nod respectfully, she would say “Thank you, I have no questions.”
The next day I sat down and asked her if she had a linguistic preference or if she spoke a second language. I wanted to make sure she was able to advocate for her child and participate in care. Her smile grew bigger and she said she spoke Beja. We were able to locate a translator and she found her voice through them. I also realized our hope of transparency through open-access notes was of little use to her, she wasn’t able to comprehend what was written in English.
Later on, the baby needed a tracheostomy, which requires two caregivers to be trained to take care of the baby when discharged. If we cannot establish that there are two competent caregivers, we cannot move forward with the surgery. She was an immigrant and had no family to help with support, trying to be the breadwinner at night by cleaning offices and a mom during the day by singing to her baby.
When the day finally came for her discharge, she held my hands, thanked me and said, “I am glad to be released.”
I let those words sink in. This case and this woman reminded me that healthcare looks and feels different to everyone and that the specific, unique patient (their needs, wants, values) must always be at the heart of what we do. It’s also a reminder that hospital policies — language and translation, visitation, surgical policy (i.e. judging competency to care after the procedure) and culturally competent medicine —need to be appropriate for a diverse set of patients.
As for this mother, I did ask her to sing one last time before she left. I was fond of her soft voice with soothing tones and the tune was very similar to my grandmother’s lullaby. She tried, but her voice choked, she apologized profusely and said, “I’m so sorry, I am overwhelmed and cannot stop crying.” I will leave you with this song:
I know why the caged bird sings, ah me,
When his wing is bruised and his bosom sore,
When he beats his bars and would be free;
It is not a carol of joy or glee,
But a prayer that he sends from his heart’s deep core,
But a plea, that upward to Heaven he flings –
By Dr. Sharada Hiranya Gowda, assistant professor of pediatrics – neonatology, Baylor College of Medicine. She also teaches in the Medical Ethics Pathway for students in the School of Medicine.