Shared from the 8/1/2017 San Antonio Express eEdition

Pediatric brain injury studied

Research suggests kids are ‘in there’

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San Antonio Express-News / File photo

Liz Tullis talks to her son Conrad in 2015. Tullis raised money for a UT Health San Antonio study on brain-injured children.

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San Antonio Express-News / File photo

Liz Tullis carries her son Conrad in 2012. Conrad makes his needs known primarily through sounds and facial expressions.

After Liz Tullis’ 17-month-old son Conrad suffered a severe brain injury when he nearly drowned in a swimming pool in 2004, doctors advised her to withdraw care or perhaps institutionalize her child.

There’s little hope for recovery, they told her, and Conrad’s injury was so devastating that no vestige of the boy he was remained.

But Tullis didn’t heed their words. Instead of shunting Conrad away, she sought tirelessly to enrich his life with a plethora of activities — swimming, art, physical and occupational therapies. She surrounded him with loved ones and friends, who interacted with him. She enrolled Conrad in school, where he is mainstreamed with children his age, even though he can neither move purposefully nor speak.

All the while, Tullis had a sense her son was somehow “in there” — conscious but unable to make his presence known to the outside world. So she began a one-woman crusade to improve the science around what happens to children’s brains when they are deprived of oxygen in near-fatal drownings.

In 2010, she found a willing partner in Dr. Peter T. Fox, director of the Research Imaging Institute at UT Health San Antonio. At the time, Fox was conducting brain-scanning research on children with autism. With Tullis’ help, Fox began studying the brains of children with oxygen-deprived, or anoxic, injury.

“Conrad Smiles has never been just about Conrad. It’s so no other mother will have to be told to withdraw care or institutionalize her child.”
Liz Tullis

Fox and his co-author’s findings, published Monday in a noted medical journal, stand to potentially revolutionize thinking about such injuries in children, raising hopes that possible new treatments might be found.

Fox discovered these children seem to suffer from something called “locked-in syndrome,” a condition in which they’re conscious of their environment but unable to interact with it because of their quadriplegia.

Adults can also have locked-in syndrome, a rare neurological condition caused by infection, stroke or disease. Some of them can only move their eyes.

Fox’s research shows this type of injury often affects only the motor-related — or movement — pathways of the brain, leaving regions related to vision, hearing, touch, social awareness, cognitive and emotion largely intact.

The medical community has long believed that pediatric anoxic brain injury involves the whole brain, Fox said, damaging networks throughout. What he was able to determine in a previous study, also published in a journal, was that the injury is actual small and specific, limited to one part of the brain that controls motor skills.

The new study shows other areas of the brain related to consciousness survive and operate much like they do in “neurotypical” children. To do his study, Fox used a brain-scanning technique different from that used to diagnose injury. Instead of a single-frame image, he performed half-hour scans that captured brain images every two seconds, enabling him to detect and measure tiny changes in neuronal activity in the brain.

The research involved comparing the brain scans of 10 anoxic-injured children with those of 10 normal children, whose scans were done while they were asleep. Fox explained that brain systems related to hearing, sight and other activities are active and firing even during sleep. The regions “talk to each other,” rising and falling in sync as long as the networks haven’t been hurt.

In the brain-injured children, as expected, the networks in the brain related to movement lacked coordination.

Not so in the other regions.

“What we demonstrated is that these systems are working coherently, they’re sharing information with each other, and the degree of network integrity in the (brain) images closely maps what parents were observing in their kid’s behavior, ” Fox said.

Fox developed a behavioral scoring system he gave to parents of the injured children, having them rate their children on behaviors, such as their ability to respond to voices, music and pet sounds. While all children in the study were quadriplegic, they had varying levels of ability to communicate, through eye movements and such.

“We can tell by their behavior they are at least minimally conscious or higher,” Fox said. He gave examples of how brain-injured children in the study made their presence known, such as an older boy who “would get (angry) if you put on a Winnie the Pooh (audiobook) or other age-inappropriate story. He loved ‘Treasure Island.’ ” Another child would throw a temper tantrum if his favorite therapist failed to show up on the appointed day.

“They can’t talk but they can make happy or unhappy noises,” Fox said. “They don’t have fine motor movement, they can’t chew or swallow, but they can bob and thrash and tell you when they’re agitated.”

For Tullis, who is listed as one of the co-authors on Fox’s paper, the result of the brain research has filled her with “joy and satisfaction.”

“This justifies all our efforts,” she said. “When you’re doing something like this, you want to believe what you’re doing is helping, but in the beginning it’s just a shot in the dark.”

The study was funded by the Kronkosky Foundation and Tullis’ Conrad Smiles Fund.

For his part, Conrad, who recently turned 15, makes his needs known primarily through sounds and facial expressions, Tullis said. “He’s developed a portfolio of sounds,” she said. “If I go into another room and he wants me to come back, he yells. If he’s happy and satisfied, he gives a soft coo. You can tell by his expression if he doesn’t like something, he sticks his tongue out.”

Tullis is hoping Fox’s work will lead to other research, especially studies that explore ways in which technology might help brain-injured kids to communicate. Fox said this current study holds implications for treatment, both now and in the future.

The scans show anoxic brain injury in resuscitated children — while not a blood clot — is essentially a small, confined stroke, he said. Emergency rooms across the nation already have stroke centers that treat the condition in adults; Fox’s research suggests immediately addressing the children’s injuries with stroke protocols could mitigate some of the damage.

Additionally, researchers currently conduct experiments with rodents that involve medicines and procedures that could one day help children immediately after they’ve survived drowning, Fox said. However, human trials are a ways off, he added.

Neuroscientist Adrian Owen of the University of Western Ontario in Canada, a premier expert on locked-in syndrome, wrote a commentary for Fox’s paper, saying it adds to a growing body of evidence showing pediatric near-fatal drowning victims are not as hopeless as doctors once presumed.

Tullis said she realizes much of this work comes too late to help her son.

“But Conrad Smiles has never been just about Conrad,” she said. “It’s so no other mother will have to be told to withdraw care or institutionalize her child.”

MStoeltje@express-news.net

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