For the most part pediatricians are insulated from death. Our little patients are surprisingly resilient. Once past that anxiety-provoking transition from placental dependence to air breathing, children will thrive in an environment that includes immunizations, potable water, and adequate nutrition. But pediatric deaths do occur infrequently in North America, and they are particularly unsettling to us because we are so unaccustomed to processing the emotions that swirl around the end of life. When a child’s death is unexpected and unexplained, we are likely to find ourselves tortured by feelings of guilt and inadequacy. Did I miss something at the last health maintenance visit? Should I have taken more seriously that call last week about what sounded like a simple viral prodrome? Should I have asked that mother to make an appointment?
The August 2017 Pediatrics opens with a thought-provoking Pediatrics Perspectives titled, “A new approach to the investigation of sudden unexpected death” ( doi: 10.1542/peds.2017-0024 ). Richard D. Goldstein, MD, and his coauthors describe an exhaustive multidisciplined and multistep approach searching for the rare neuroanatomic, cardiac, and metabolic conditions that might have explained the unexpected death of a child who was under 3 years of age. Using a variety of sophisticated techniques, including DNA analysis and central nervous system imaging, the investigators examined not only the child who died but also his parents and surviving siblings.
Their approach, which has been labeled the Robert’s Program , is particularly appealing because it is careful to address the families’ concerns about their surviving and future children. I found the inclusion of the dead child’s pediatrician and the office of the chief medical examiner in the summation of the investigation especially appealing.
However, I have trouble envisioning how this novel approach, funded by several philanthropic organizations, could be rolled out on a larger scale. Here in Maine and in many other smaller cash-strapped communities, the medical examiner’s office is overburdened with opioid overdoses and traumatic deaths. The police and sheriffs’ departments may lack sufficient training and experience to do careful scene investigations.
In reviewing the summary of the 17 deaths included in the article, I was struck by the inclusion of 3 cases in which the final cause of death was meningitis or encephalitis “without clinical prodrome.”
What exactly does “without clinical prodrome” mean? Does it mean that the parents or a day-care provider missed the subtle signs that the child was ill? Were one or two poor feedings written off as just one of those things? Did the child feel a bit warmer to the touch but not hot enough to warrant hunting for the thermometer? Was the pediatrician involved at any point during the period of time when the disease process must have been evolving? Did he or she miss a subtle change in tone or discount the parents’ observations? These things happen.
While a thorough investigation did eventually unearth the cause of death in these three cases, it is in that devilish prodrome that the seeds of guilt can continue to germinate. Parents and physicians will continue to wonder whether someone else with more sensitive antennae might have picked up those early signs of impending disaster. The answer is that there probably wasn’t anyone with better antennae, but there may have been someone with better luck.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.”