“SB is a 3 year old girl with a diagnosis of methylmalonic acidemia who initially presented with abdominal pain, nausea and vomiting…” This statement became almost a mantra for me for two weeks during my third year medical school inpatient pediatric rotation.
As the son of a child psychiatrist and social worker, I became intrigued by the biopsychosocial dynamics of this child. As I studied her chart, I realized that she had only spent a few months of her life outside the walls of the hospital. She was developmentally, emotionally and physically delayed. She received little to no services outside of the multitude of specialty teams that would dash in and out of her room without speaking with each other. Her twenty-three-year-old single mother was confused and overwhelmed by her daughter’s terminal condition and the obligations of balancing her full-time job and the care of her other two children.
I became haunted by the lack of support for the patient and her family and after discussing the case with my father, he directed me to the new field of palliative medicine. This new specialty encompassed all of the elements that could help this child; better symptom management, psychological support for her and her mother and clear goals of care to allow focus on quality of life.