This letter relates to a CMAJ commentary by Batton and Batton.1 As parents of a preterm child, the term “significant physical and developmental issues” represented a grey area for us.
In our extensive readings, we came across many nebulous terms referring to outcome: “language impairments with lasting effects,” “cognitive-developmental disorders,” “dysfunction,” “unfavourable outcome,” “functional and social–behavioural deficits” and “mental and motor impairments.” There were many other examples. The National Institute of Child Health and Human Development preemie outcome calculator gave our daughter a 47% chance of dying or having “moderate to severe neurodevelopmental impairment.” The greatest challenge for us was understanding the meanings of these terms. We knew that severe impairments included deafness, blindness, cerebral palsy and profoundly low IQ, but what about a “moderate” impairment? What is “dysfunction”? The only weakness in our interactions with the doctors caring for our baby was in understanding the meaning of the term “significant physical and developmental issues.” We did not necessarily need numbers, odds or statistics, but rather, real-life examples. A more open, clear dialogue between doctors and parents is imperative.