Jim Matthews** was only fourteen years old when he was struck by a car while riding his bike. Unfortunately, he was not wearing a helmet. One of his first memories after the accident was being airlifted to Morristown Memorial Hospital. There, he spent two months in a coma before transferring to Children’s Specialized Hospital in Mountainside for rehabilitation.
Nine years later, Jim lives with acquired partial paralysis, poor balance, intermittent general weakness on his left side and headaches. He also deals with muscle spasticity and muscular tightness in his chest which is sometimes painful. Cognitively, he struggles with expressive language, delayed and impaired processing and memory deficits. At twenty-two, he lives at home with his mother and father who help him with all of his daily routines. “Life isn’t the same with a brain injury,” he responds when asked how his injury has impacted him. Unfortunately, Jim is only one person within a significant group of children and adults who have suffered a brain injury.
A Silent Epidemic
According to a newsletter distributed this past winter by the New Jersey Department of Health, “Every 21 seconds, a person in the United States sustains a TBI; an estimated 7,000 children die, 250,000 are hospitalized and 400,000 are treated in an Emergency Department. The highest rates of TBI-related Emergency Department visits are for those 0-4 years of age and older teens 15-19 years of age.” Still, TBI is often referred to as the silent epidemic. Rene Carfi, Senior Director of the Brain Health Network, explains, “…unless the injury was catastrophic, people can look fine on the outside and still sustain cognitive, emotional and behavioral impairments.” Also, deficits may not show up immediately, especially in children.
When a child is injured, the full extent of the brain injury can take weeks, months or even years to emerge and many professionals neglect to connect a current issue with a past injury. Dr. Chiaravalloti, Director of the Neuropsychology and Neuroscience Laboratory and Traumatic Brain Injury Laboratory at the Kessler Foundation, explains, “A child may have cognitive deficits that are not realized at first. As he or she grows, their brain no longer develops according to the expected trajectory and this can impact executive skills, like organization, planning and problem-solving, that might not crop up for years down the road.” Also, behavioral issues caused by brain injuries in young children are often overlooked because the behaviors are age appropriate. As the child gets older and the behaviors remain, they can be misdiagnosed with other disorders like ADHD. Carfi adds, “Children tend to grow into their injuries. As they get older, the effects of the injury start to become more apparent.”
This can be especially devastating to a child’s schooling. An article titled, “Brain Injury: The Silent Epidemic in the Classroom” found in the November 2011 issue of NJEA Review cites, “The N.J. Department of Health and Senior Services Center for Health Statistics recorded 1,231 children in New Jersey between the ages of 0-17 were hospitalized with a Traumatic Brain Injury (TBI) in 2007, and 22,436 more children ages 0-17 were taken to emergency rooms with a TBI. Yet, only 1,260 students in New Jersey who are in special education are classified as TBI.” The author further states, “… I have heard too often that schools did not need to have an in-service on the topic. Administrators weren’t aware of students who had prior brain injuries because families chose not to report it. Parents mistakenly believed that their children could simply pick up where they left off prior to their injuries. Some children may have been injured in their preschool years, and no one has made the connection to current cognitive/learning, psychosocial, language, or physical challenges.”
Medical professionals can also overlook the lasting effects of brain injury. Many children are released from hospitals and rehabs faster today and without referrals for rehabilitation should problems appear over time. If your child is ‘walking and talking,’ they are often considered healed, but that may not be true.
A Closer Look at Brain Injury
There are two types of brain injury: Traumatic Brain Injury (TBI) and Acquired Brain Injury (ABI). According to a presentation from the Brain Injury Alliance, “TBI is an insult to the brain caused by an external physical force that may produce a diminished or altered state of consciousness which results in impairment of cognitive abilities or physical functioning. Common causes of TBI in kids include: abuse (including Shaken Baby Syndrome), falls, sports injuries and car accidents. The Brain Injury Alliance presentation also states that “ABI is an injury to the brain which is not hereditary, congenital or degenerative and has occurred after birth.” Stroke, encephalitis, meningitis and brain tumors can all result in an ABI.
Though no two brain injuries are alike, there are three defined levels of severity. A mild brain injury occurs when the person experiences some change in mental status, from feeling dazed to losing consciousness for a brief time. Moderate injuries are defined by a loss of consciousness for a few minutes to a few hours. A severe TBI, like Jim’s, includes a prolonged state of unconsciousness.
A common misperception about brain injury is that the severity of an accident dictates the severity of the injury. Mild brain injuries, though, can have lasting effects. Carol Albanese, Executive Director of an empowerment and community integration program for brain injury survivors called The Opportunity Project warns parents, “There is no such thing as a simple concussion for a child or adolescent; their brain is still developing and any blow to the head can affect them.” Also, you don’t need to be struck in the head to suffer a brain injury. Whiplash and Shaken Baby Syndrome can both lead to lifelong impairments.
A Family Issue
Much like the injury itself, the experience for family members is often sudden and painful. Parents go through a grieving process as they let go of the child they once knew while learning to navigate a new kind of life. They must tackle additional responsibilities: like IEP’s, managing their child’s care and coordinating therapy visits and doctor’s appointments. Some parents assume the role of caregiver. Financial strains are felt if parents take a leave from work or stop working all together.
Dr. Chiaravalloti notes that siblings are also impacted. They often feel sad for their brother or sister who was injured, but they miss their parent’s attention. Parents need to remember the needs of the whole family, not just the child who has been injured.
What Can Parents Do
Many brain injuries can be prevented. Use highchairs, booster chairs and cars seats for young children and always make sure they are strapped in properly. Also, empty baby pools and tubs completely as babies can drown in very little water. Be aware of your stress and anxiety levels (as well as your babysitter’s) when caring for a baby to avoid Shaken Baby Syndrome. Make sure your kids wear helmets when biking, rollerblading, riding a scooter or playing contact sports. Jim echoes this advice with, “Don’t get a brain injury… wear a helmet when playing sports.” Children should wear seatbelts while riding in the car and parents should urge their teens to drive safely when they are old enough.
Also, know the signs of brain injury. If your child loses consciousness – even briefly – take them to the emergency room. If your child seems dazed, loses track of time, doesn’t know who they are or seems generally confused, they need medical attention. It is harder to identify injury in younger children who do not yet have the language to explain what they are feeling. If in doubt, go to the emergency room.
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** Name has been changed