A new study conducted by researchers from The University of Texas Health Science Center at San Antonio (UT Health San Antonio) confirms that locked-in syndrome is the predominant outcome in children who survive non-fatal drownings. Locked-in syndrome is a condition in which individuals are awake and fully aware of their surroundings but unable to move or speak.
The research, directed by Dr. Peter T. Fox, professor of radiology and neurology and director of UT Health San Antonio’s Research Imaging Institute, builds upon previous studies conducted by the team that identified the cause and explanation of locked-in syndrome in pediatric drowning survivors. The initial brain imaging studies were published between 2016 and 2017, and this latest study, published in the journal Pediatric Neurology, is the largest to date on the subject.
The study analyzed a total of 154 children who had survived non-fatal drownings, and the results confirmed that locked-in syndrome was the predominant outcome in these cases. Caregivers were surveyed to assess the children’s neurological outcomes, and 60% of the children (93 out of 154) were classified as locked-in according to their caregivers’ assessments.
The study also found a wide range of disability among the children. Approximately 25% of the children were mildly impaired, nearly normal in all functions. Half of the children were moderately impaired motorically but demonstrated preserved cognition and perception. Another 25% were severely impaired motorically but showed some cognitive function. Among the moderate and severe groups, almost 80% were locked-in.
The researchers emphasized the importance of caregivers’ observations and their ability to understand the cues exhibited by locked-in children. Dr. Fox stated that physicians and healthcare teams should engage more with parents and caregivers, trusting their observations and utilizing them as a valuable resource. He highlighted the need for respect and awareness of the quality of their observations.
One of the children who played a significant role in bringing attention to locked-in syndrome was Conrad Tullis of San Antonio. Conrad, who survived drowning at the age of two in 2004, lived to be 20 and inspired many with his journey. His mother, Liz Tullis, was the one who initially recognized Conrad’s locked-in state and brought it to Dr. Fox’s attention. She noticed that Conrad was responsive despite being told that he could not understand her. Tullis, along with other parents from a support group for parents of children who had survived drownings, helped recruit participants for the studies conducted by Dr. Fox’s team.
The findings of this study shed light on the reality of locked-in syndrome in children who survive non-fatal drownings. It underscores the importance of caregiver observations and emphasizes the need for healthcare professionals to value and engage with these caregivers to better understand and support the locked-in children in their care.
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