SAN ANTONIO – Conrad Tullis was 17 months old when he fell into a pool and nearly drowned, suffering the sort of brain injury that changed him and his family forever.
While emergency medical personnel did everything according to the book, the book is now changing, and so is the name of the condition he was diagnosed with. Instead of blithely calling it a vegetative state, it will be called Conrad’s Syndrome, where a child may still be aware, feeling emotion, and reacting to his surroundings but is locked in a body that cannot function or develop normally.
“He is still in there” was a mantra his mother, Liz Tullis, always explained to anyone who asked if he could hear or understand what was happening around him. She figured it out when she saw him smile from time to time at happy moments, but the medical community needed convincing.
While Conrad Tullis passed away at the age of 20 in San Antonio, he did so with a life span no one predicted, finishing all 12 years of high school and creating a research project at UT Health San Antonio that is rewriting the book on these children.
His brain was studied and compared to that of his classmates at Cambridge Elementary, and he was included in as many school activities as possible for a student who used a wheelchair and could not communicate.
The UT Health study, in which 154 children were studied, was conducted by a team directed by Peter T. Fox, MD, professor of Radiology and Neurology and director of UT Health San Antonio’s Research Imaging Institute.
The study found the following:
- 60% of children studied were classified as “locked in” by family caregivers. They are awake, aware and able to understand.
- Children admitted to the hospital after nonfatal drownings had better outcomes if their hospital stay required no medical intervention such as intubation.
- If the children were responsive, not in a coma, at admission and discharge, their outcomes would be better.
Conrad’s family says they are incredibly honored that doctors will now call this condition “Conrad’s Syndrome” and give a meaningful name to something they worked so hard to uncover.
Shortly after his near drowning, the family created a local nonprofit called Conrad Smiles. It works to bring awareness and support to families who are caring for “locked-in” children.
There’s much more to the UT Health San Antonio study that could impact future near-drowning cases. The full article in Pediatric Neurology can be found here: Long-Term Neurocognitive Outcomes in Pediatric Nonfatal Drowning: Results of a Family Caregiver Survey - Pediatric Neurology.