San Antonio has emerged as a vanguard in pediatric medicine with the naming of a previously misunderstood condition following a near-drowning incident, now known as Conrad's Syndrome. This groundbreaking shift is credited to one local family's unyielding determination and a pioneering research project at UT Health San Antonio.
Liz Tullis refused to accept the dire prognoses for her son Conrad, who suffered a severe brain injury after nearly drowning at the age of 17 months. Her advocacy led to the discovery that her son and many other children who experienced similar accidents were actually "locked-in", a state where they remain conscious and aware but are unable to communicate due to paralysis. This realization pushed her to start Conrad Smiles, a nonprofit aimed at funding research and spreading awareness about the condition.
Dr. Peter Fox of the UT Health Science Center Research Imaging Institute played a key role in studying the brain scans of children like Conrad. His research included interviews with 200 parents, which revealed that as many as 80% of children who survived drownings were "locked-in." Fox told San Antonio Report, “Parents understand what’s going on with their child and they’re trying to report it to the physicians as best they can and they were being ignored.”
Effectively altering the understanding and approach to such cases, the new terminology, Conrad's Syndrome, replaces what was formerly and indifferently termed a vegetative state. According to a KSAT report, the family is incredibly honored that the condition bears Conrad's name, acknowledging the family's efforts to better understand this condition. The study that brought this issue to light was published in Pediatric Neurology, finding that children who received little to no medical intervention, like intubation post-accident, typically had better outcomes.
Despite Conrad's unfortunate passing in 2022 from respiratory illness-related complications, his legacy continues to guide medical professionals and touch the lives of similarly affected families. His mother's dedication to not only care for her son but also to challenge the medical status quo has proven to be a catalyst for change in pediatric care. As a testament to Conrad's impact, Dr. Fox's research was honored as the best paper of the year by the Journal of Pediatric Neurology, and Conrad Smiles is now expanding its mission to include support for the understanding and treatment of pediatric nonfatal drownings.
The family's initiative and Dr. Fox's findings are foundational to a growing awareness campaign and are expected to have far-reaching implications for how locked-in children are treated in the aftermath of nonfatal drownings. The forthcoming documentary by Conrad Smiles aims to bring further visibility to these children's experiences and challenges, as Liz Tullis highlighted in a San Antonio Report interview, “It’s amazing to me that San Antonio is the only place that looks at [locked-in syndrome]”.
