Patient and Family Perspectives: Lisa Treleaven

Featuring members of EMSC’s Family Advisory Network (FAN). Learn more about the FAN.

Name: Lisa Treleaven

State: Texas

Why did you become a FAN?

I became a FAN to share my perspective as a parent of a child with complex medical needs and suspected undiagnosed genetic condition and to allow my children to share their experiences as well. We especially love raising awareness about tracheostomies and special needs peer advocacy.

What is the most important thing for emergency practitioners to know about caring for children in emergencies?

The adage goes, “When you hear hoofbeats, think horses, not zebras.” However, individuals with medical complexities are outside of the norm. They are zebras! When caring for complex medical needs children, like my daughter, I encourage practitioners to “think zebras” regarding both diagnosis and treatment. In assessing emergency situations, it is helpful to consider possibilities which would be less likely in typical individuals. For example, my daughter presented with mild discomfort and pain under the sternum upon inhalation, the medical team assured her that it was most likely reflux, but an x-ray and scope revealed a bone fragment in her lung from a previous procedure.

Similarly, “think zebras” in terms of risk assessment of interventions, given the unique and sometimes unknown physiology of a complex individual. It is important to think about a 1% chance of complication or rare side effect not as an estimate of likelihood of occurrence applicable to children outside of the norm that these statistics are based on. Rather that being outside of the norm, my daughter and children like her routinely have a greater likelihood of being in that 1% who experience complications. For this reason, we are conservative with interventions.