Editor’s note: The San Antonio Report is pleased to feature the weekly bigcitysmalltown podcast hosted by Robert Rivard, co-founder of the Report. We’ll be publishing a brief synopsis of the podcast each Tuesday.
When Liz Tullis’ then 17-month-old son Conrad survived falling into a pool and drowning, he sustained a severe brain injury that paralyzed him. Doctors gave Tullis two choices: withdraw care and let Conrad die, or institutionalize him.
“I felt like they saved his life to give him a death sentence,” she told host Robert Rivard in the latest bigcitysmalltown podcast. “They weren’t being mean,” Tullis said. They just didn’t know much about pediatric nonfatal drownings.
When she decided she wouldn’t do either, there was no information on how to handle her son’s symptoms.
But soon, she noticed things that made her believe Conrad was still conscious.
Tullis started the nonprofit Conrad Smiles to fund research to address an issue ignored for too long. That’s how she met Dr. Peter Fox, founder of the UT Health Science Center Research Imaging Institute in San Antonio, who examined Conrad’s brain scans, and those of other children who suffered anoxic brain injuries, and discovered that the children were “locked-in,” meaning that they were conscious and aware, but unable to communicate in any way.
Tullis told Rivard that anyone who got to know Conrad realized his reactions expressed that he knew what was going on around him. He attended kindergarten to 12th grade at Alamo Heights ISD and showed a will to live because he had fun by going to concerts and spending time with friends. Conrad died in 2022 from complications related to a respiratory illness.
But his story is adding what had been an ignored subject into textbooks, turning San Antonio into the city to discover locked-in syndrome, now called Conrad’s Syndrome.
“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,” Fox said.
Dr. Fox’s research in San Antonio included interviews with 200 parents across the U.S., and discovered that 80% of children who survived drownings were “locked-in,” unable to respond because of their paralysis.
Fox’s study proved Tullis’ suspicions right. In his life, Conrad learned how to close his mouth and more, but more importantly, he experienced inclusion, she said. Now she hopes the study will spread awareness to caregivers as early as possible so that they help kids with Conrad’s Syndrome enjoy life.
She said her nonprofit is working on a documentary that will highlight Conrad’s impact on his peers’ lives.
“It’s amazing to me that San Antonio is the only place that looks at [locked-in syndrome],” she said. “When I interact with all the other families … They’re still saying the same thing. When a child gets put in the hospital, it’s like [the doctors are] reading from a book that was written a million years ago.”
Tullis’ nonprofit Conrad Smiles will expand its mission to support the understanding and treatment of pediatric nonfatal drownings, and will fundraise for Fox’s next project about better diagnostics in communities that need it.
Fox’s research on Conrad’s Syndrome was published in the Journal of Pediatric Neurology, and is being given an award for best paper of the year.
Tune in to episode 54 of bigcitysmalltown for the full interview with Liz Tullis and Dr. Peter Fox.
