A San Antonio mom made a terrifying realization when she was sitting by the bedside of her 15 year old son, who doctors told her was in a 'near vegetative state' due to a near drowning incident.
Liz Tullos says she realized as only a mom can realize that Conrad was not in a coma at all. She noticed by the way that he communicated by moving his eyeballs, that he was a victim of the scary condition called 'locked in syndrome,' where a person is able to think, hear, and even see, but the patient's body is non responsive, and the patient is unable to move.
"The function related to thinking and seeing and feeling were all intact, and the injury was isolated to the very small area of the brain that controls movement," she told 1200 WOAI's Megan Bishop.
She says she enlisted the help of Dr. Peter Fox with the Systems Research and Imaging Department at U.T. Health in San Antonio, and he discovered that was indeed the case. It wasn't that Conrad was in a vegetative or non responsive state at all. It was simply that his body had ceased to respond to the usual commands.
"That is where I was able to recruit Dr. Fox, who looked at this kind of condition, because he does a special type of imaging called 'functional imaging."
Locked-in Syndrome is described by the National Organization for Rare Disordered as: "a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. Individuals with locked-in syndrome are conscious and awake, but have no ability to produce movements (outside of eye movement) or to speak (aphonia). Cognitive function is usually unaffected. Communication is possible through eye movements or blinking. Locked-in syndrome is caused by damaged to the pons, a part of the brainstem that contains nerve fibers that relay information to other areas of the brain."
Liz says despite being stuck in his science fiction type medical condition, this diagnosis has given her new hope for her son't future.
"People don't have to take my word as a mom that my son is in there, but now we can help keep him stimulated, and help him have as good a life as possible."
Recent studies and articles in the medical literature have noted that despite significant motor disability affected individuals can retain a good quality of life. In addition, quality of life is unrelated to the degree of physical impairment. With advances in care and assistive technologies, individuals with locked-in syndrome can become productive members of society.