YOUR HEALTH: Helping children “locked inside” their bodies

SAN ANTONIO, Texas – Conrad Tullis was a healthy, happy baby, until he was 17 months old.

That's when he fell into a pool and drowned 13 years ago.

Doctors resuscitated him, but a stroke left Conrad with massive brain damage.

"You know an infant needs maximum assist for everything, you know, their eating, their movement from one place to another," said Conrad's mother Liz.

"But these kids grow and they're cognitively aware."

Liz established the Conrad Smiles Fund, recruiting parents and researchers, who also believed their kids had potential.

"70% of families that participated in the study indicated that in the acute setting when the child was first admitted in the hospital," explained Dr. Peter Fox, the director of the University of Texas Health San Antonio Research Imaging Department.

"The recommendation they were given by their neurologist was to withdraw care, because their child would never recover in any meaningful way."

But some kids did get better:  listened to music, recognized friends, even communicated.

"They answer by eye blink," said Dr. Fox.  "They can spell things out by eye movement control on a computer."

"To me, what`s so important about this research is now we have the science behind us," said Liz Tullis.   "You know so it's exciting because now we're building from what we knew and what we developed. If we can make something better out of this for other people, that's something that's so satisfying."

NEW RESEARCH:  The research at UT Health San Antonio by Dr. Peter Fox and colleagues is groundbreaking because it shows that the injury suffered by Conrad and other children is not widespread throughout the brain, as was thought, but is actually confined to a single location.  The hope therefore is that an agent, when developed, could be delivered right to the site in a hospital emergency room.  Drowned, resuscitated children seen in the ER could actually be saved from what locked-in children currently endure.  The findings of the research also confirm, for parents such as Liz Tullis, that the personalities they see in their locked-in children are real, because the brain circuitry for emotions, perception, touch, etc., is largely intact.  That is comforting for these parents.  (Source: The University of Texas Health Science Center at San Antonio)

If this story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Jim Mertens at jim.mertens@wqad.com or Marjorie Bekaert Thomas at mthomas@ivanhoe.com.