Traumatic brain injuries (TBIs) can be devastating. When a person suffers a blow to the head—due to a sports injury, military combat, a car crash, a fall, a violent attack, or some other accident or event—it can alter his or her brain function and behavior.
For some, the change is temporary. For others, it never goes away. And for some, whose injuries remain unidentified and untreated, it can set off a spiral into depression, substance abuse, criminality, homelessness, or—most tragically of all—suicide. Yet, as dire as TBIs can be and as common as they are —1.7 million per year, estimates the CDC—the lack of knowledge and resources around them is shocking.
“I know firsthand how life-shattering unidentified TBIs can be,” says Claire Galloway, author of A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury (Brandylane Publishers, 2017). “And I also know how ill-equipped our healthcare system, the education system, and the public in general are to detect, diagnose, and treat them. This situation has to change. Our children deserve better.”
Galloway’s book tells the story of her son, Luke, who suffered a closed-head TBI at a park playground at almost 3 years old. As she and her husband were spreading out blankets by the pool, they took their eyes off Luke for a few seconds. He darted away and into the descending arc of a child on a hard plastic swing. It struck him on the head and sent him flying. As Galloway rushed to him, she feared he might be dead. He wasn’t. But he was forever changed.
“The child who ran away from that blanket never returned to me,” she says. “I waited, hoped, and prayed for the next 17 years, but he was like a different child.”
Luke was visibly dazed from the blow. But because he had no other obvious signs of concussion or external injury, the pediatrician advised against an emergency room visit. But even as the family waited out the recommended 24-hour observation at home, it was clear to Galloway that something was seriously wrong. Her happy-go-lucky little boy had transformed into an anxious and easily agitated child.
As he grew up, different symptoms appeared. He complained of noises in his head. He experienced synesthesia. He got stuck in thoughts he couldn’t move through. He struggled in school, despite his high IQ. He became socially isolated. He began to act out impulsively, and eventually, depression set in.
Despite Galloway’s many pleas for help to physicians and teachers and her certainty that her son’s problems stemmed from his playground accident, doctors didn’t diagnose Luke with a brain injury until he was 18 years old. By then, years of psychological overlay, frustration, and shame had taken their toll. When he finally lost all hope, he bought a gun, put it to the exact area of his head that had suffered the injury, and pulled the trigger.
Galloway has been determined to raise awareness for others about the scope and impact of unidentified TBI, especially closed-head injury. She wants physicians, educators, psychologists, family, friends, and of course, parents to recognize how a TBI can manifest so doctors can identify and treat it as soon as possible. Because medical and educational professionals can easily dismiss what cannot be seen, she hopes parents will learn through Luke’s story what those TBI symptoms might be and stand their ground with doctors and teachers when their children change after a blow to the head.
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Take every bump on the head seriously. There may be no marks or immediate signs of a problem but that doesn’t mean there isn’t one. If your child loses consciousness, even briefly, or seems dazed and confused, vomits, or shows unequal dilation of the eyes, seek medical help right away. Also, be aware of any other unusual behavior—for instance, Luke didn’t cry, which is not normal for a toddler—and don’t try to explain it away.
“Teach your child to tell you every time she has a bump on the head,” suggests Galloway. “This will alert you to be on the lookout for anything that seems ‘off.’”
Doctors must also take these injuries seriously. Many physicians lack a precise protocol for diagnosing head injuries, so parents need to understand what the issues are, says Galloway. If you’re seeing worrisome symptoms in your child and your pediatrician doesn’t order appropriate testing and follow-up, you may need to seek emergency or urgent care to have your child assessed. My advice to parents is simple: Don’t give up until you are satisfied with the physician’s response and until that response matches your level of concern.”
Many TBIs go undiagnosed. Many TBIs remain undiagnosed because physicians don’t believe the parent’s reports of behavioral, emotional, or physical changes in their children. They might not believe what they can’t see, or they might initially diagnose a concussion but then dismiss a parent’s observations of lasting changes, assuming the injury has healed.
“For example, one of Luke’s symptoms was perseveration, meaning that he would get stuck on a thought or action and could not be redirected,” notes Galloway. “This kind of behavior is common with some types of brain injury, but a physician might dismiss it as simply a bratty episode.”
Brain scans are not always definitive. Sometimes, evidence never shows up on a scan. If your child does have a scan after a strike to the head and it appears to be clear, don’t take this as proof that nothing is wrong. There are neuropsychological tests that provide as much or more information than a scan.
“When Luke was finally diagnosed, the physician ordered a SPECT scan,” says Galloway. “He told us, ‘Nothing may show up, but don’t think for a moment that this isn’t a traumatic brain injury.’ It turned out the scan did show evidence, but it was the evidentiary info I shared with the physician that served as his diagnostic evidence.”
Time is of the essence. The earlier your child’s TBI is identified, the better. He will then have the help he needs in school school, and his peers and family will be taught to understand and to be his support system. And while it’s never too late to treat a head injury, any delay can be damaging. So seek help as soon as you realize a problem may exist. “Parents must be incredibly persistent, and doctors and educators open-minded,” says Galloway. “I shared my observations many times with professionals who should have been trained to know there was a problem, and yet I was ignored again and again.”
What can’t be easily seen by doctors and teachers is too often dismissed. The signs of a TBI might not be the obvious ones that physicians look for during an exam. They might look like social issues, laziness, or manipulation. Or they may look like some other problem depending on a specialist’s area of expertise. (Consider the adage “When you have a hammer, everything looks like a nail.”) Galloway says parental observations of unexpected changes in the ability of a child should receive far more credence than they currently do.
“I recently attended a conference at a major medical school, and a physician was speaking on how to assess TBI in the Emergency Department,” she says. “There was a list of medical criteria to consider, but number one on the ‘What to Ignore’ list was parental observation! Self-doubt can set in when parents are blamed continually.”
TBI may masquerade as a behavior issue. Luke exhibited unexplained delays in emotional maturation, behavioral outbursts, and social difficulties. All of these were clues that could have led to an earlier diagnosis. Instead, no one ever connected the dots. “Luke’s episodes of fist clenching were eventually recognized as seizures, yet they were interpreted as fits of rage for years,” notes Galloway. “I was even accused by a preschool teacher of being an abusive parent. Luke’s agitation during one doctor visit caused him to run wildly around the room, which led to his being labeled a behavior problem.‘You just need to be a better mother,’ the doctor told me, despite having been told we were there because Luke had not returned to ‘normal’ after the playground accident. These problems should have been recognized as physical signs of a brain injury.”
The effect of TBI might not be immediate. Children often grow into their injury as they access different parts of the brain at different ages. For example, when Luke grew into the need for executive brain functioning—such as planning, flexibility of thought, self-awareness, impulse control, organization, time management, working memory, and self-control—he suddenly couldn’t complete higher-level assignments or read higher-level books.
“Parents need to ask themselves’, Why are previous As turning into Cs and Ds?” notes Galloway. “Don’t assume the child is just lazy or a ‘screw up,’ as Luke called himself.” Think back: Never rule out a possible brain injury, even if professionals do. Keep searching for answers. Keep insisting.
“If our lives are just stones across the water, I want Luke’s ripples to go far,” she adds. “I want them to touch the lives of other children and adults like him who suffer from TBI. I hope that by sharing Luke’s story, you, your patients, your students, your constituents, and your loved ones will find the help they need so their stories can have happier endings.”
Claire Galloway has been advocating for greater awareness of closed-head traumatic brain injury in children since 2008. She has spoken at several brain injury conferences and to students of education. This is her first book. She resides in Virginia with her husband Mark.