A Parental Perspective on Strengthening Knowledge After Acute Flaccid Myelitis

Abstract

We write as nurses, advocates, physicians, and most importantly as parents who are joined through our children's experience with acute flaccid myelitis (AFM) in the United States in the last decade. In 2012, neurologists in California reportedtotheCentersforDiseaseControlandPrevention (CDC)astrangeclusterofnon-polio-associatedAFMcases, characterized by virus-associated injury to the motor neurons in the spinal cord. 1 At the time, the CDC felt that these cases did not exceed the very low expected background rate of AFM associated with nonpolio viruses. Certainly, more than 60 years ago, parents feared the warm summer months because they carried the risk of infection by the polio enterovirus. But thanks to the 1953 discovery of a polio vaccine, poliomyelitis rates plummeted. The affected children aged. As a consequence, most physicians, nurses, and physical therapists trained in the United States have never seen a case of pediatric AFM.Against this backdrop of absent training in medical personnel and a sluggish response from the CDC, one of us (E.O.) created a private Facebook group (called Parents of Children With Polio Like Syndrome/Acute Flaccid Myelitis) for parents navigating this rare condition with little guidance.Wehavereadeverypost,sharedinformationgleaned from AFM specialists (many of our clinicians had little access to this expertise), celebrated incremental and enormous gains in some of our children, and grieved together as 2 children died of complications of their paralysis. We have watched in horror as the group expanded to include members from other continents and exceeded 500 members this year. Here, we would like to share 3 observations with readers who, as pediatricians, are at the forefront of detecting, reporting, and caring for new cases.First,wedreadlatesummer.Wegrievethosefinaldays whenourstill-normalchildrenclimbedtheirlastplayground structuresortooktheirlastrunsdowntheblockortheirlast independent breaths. We relive the trauma of the hospitalization, when at night we kissed our brave children, not knowing whether they would awaken stable, intubated, or unable to ever walk again. In addition, we fear the coming wave of new bewildered parents to join the site, who will spend sleepless months away from work and their other children,battlingfortheirchildren'srecovery.In2013,2015, and 2017, we were lulled by the relative quiescence in AFM cases and hoped that the risk had passed. Lulls were followed by spikes in incidence in 2014, 2016, and 2018. The risk has not passed, and the cause remains elusive.