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For the Frost family, the first miracle happened when their family survived a horrific car crash that could easily have ended in tragedy.
In the months since the accident, other miracles, large and small, have transformed the Frosts. As Gemma Frost, now 7, and big brother Graeme, 10, have continued to recover from brain injuries sustained in the crash, the family has learned that every milestone reached can bring new challenges and joys, and that recovery from such critical injuries is a constantly evolving process that can affect every facet of life for both the injured and those who love and care for them. In the Frosts case, they have benefited from a program designed to respond to all of the issues that can affect someone who experiences a brain injury, at each stage of recovery: the Brain Injury program of Kennedy Krieger Institute's Pediatric Rehabilitation Continuum.
The Brain Injury program is the only pediatric brain injury program in Maryland to be accredited by the Commission on Accreditation of Rehabilitation Facilities, and its counterpart, the Comprehensive Rehabilitation Program works with children and adolescents following orthopedic surgery and other procedures requiring intensive rehabilitation. Both programs include four levels of service tailored to the needs of patients in different stages of recovery an inpatient hospital, outpatient clinic, day transition program and home and community assistance. Depending on each child's condition and rehabilitation goals, the team of professionals at work in the Brain Injury Program can include pediatric physiatrists, nurse practitioners, nurses, nutritionists, educators, behavioral and neuropsychologists, physical and occupational therapists, speech-language pathologists, audiologists, childlife and therapeutic recreation specialists and social workers.
The inpatient Brain Injury Program serves approximately 50 children with brain injuries each year. While most of these injuries stem from trauma, others occur as a result of strokes, infections and metabolic disorders. Although the actual number of patients treated in the unit has remained stable in recent years, the number of patients whose injuries occurred through trauma has declined thanks to improved awareness and use of safety features such as car seats and bicycle helmets, better car design, safer playgrounds and more effective emergency care.
Brain injuries often occur as a result of the rapid acceleration and deceleration of an individual's head, which creates rotation that delivers a tremendous amount of energy to the brain, which can cause injury. There are two main types of initial brain injuries contusions (bruising) and diffuse axonal injuries (stretch injuries to the neurons). Other secondary injuries can occur related to swelling and bleeding. The primary injuries usually go hand in hand, says Dr. James Christensen, director of the Brain Injury Program, and combine to create changes and deficits in cognition, behavior and motor skills. "Memory, attention, processing speed and organization are often disrupted. Many patients with brain injuries become impulsive and disinhibited," he says.
Although most patients with brain injuries do not experience severe motor disabilities, many show problems with strength, coordination and movement. Even patients who recover well still lose some rapid motor response.
Gemma and Graeme Frost experienced all of these types of symptoms, although the way the symptoms appeared and the children's recoveries have been quite different. On December 4, 2004, the car the children were riding in hit a patch of black ice and spun into a tree. Gemma was sitting right where the car struck the tree and sustained an open skull fracture, shattering her left eye orbit, leaving the eye swollen shut. Doctors used a bolt to monitor and relieve intracranial pressure that was causing her brain to appear "cloudy" on CT scans. She remained in a coma for three weeks. Graeme, sitting right behind her, was injured when his head struck a window with such force that the glass broke. He developed bleeding in several ventricles in his brain and remained in a coma for several days.
Doctors removed the drain used to relieve the swelling in Graeme's skull after a few days, but the pressure returned and he underwent surgery to put in a shunt. Once Gemma emerged from her coma, doctors planned reconstructive surgery on her eye, but cancelled it once they discovered an abscess filled with shards of wood and glass.
Graeme's injury primarily affected his motor skills. He could not walk or swallow and relied on a naso-gastric tube for nourishment for nearly five months. Gemma's core issues were cognitive she could walk, but couldn't remember how to talk, what many words meant, how to dress or how to brush her teeth. "She had to relearn everything," says the children's mother, Bonnie.
After Graeme and Gemma were admitted to the Brain Injury Unit, professionals from each branch of the program's interdisciplinary team evaluated them. Within days, the team met with the Frosts to discuss appropriate rehabilitation as well as probable discharge dates. "Then, we moved right into treatment," Dr. Christensen explains. "Early rehabilitation can prevent problems that can interfere with recovery. If a child with a brain injury is confined to bed and can't move his ankle, when he finally gets up, the foot will probably point straight down, forcing him to walk on his tiptoes."
By including professionals who focus on the cognitive and emotional elements of brain injury, the program is able to provide more comprehensive care. "Treatment can be less effective when you don't consider the behavioral components of the injury," Christensen says. "If one misattributes inability to respond to requests as being oppositional or uncooperative, you can imagine how that affects a child's self-esteem."
It's difficult for physicians and therapists to plan a child's recovery program or gauge its success without a thorough understanding of the child's abilities before their injury. Neuropsychologist Beth Slomine completes a record review for each patient, assessing cognitive skills, attention, memory, processing speed and other areas, to get a sense of how a child is likely to respond to recovery, and how he or she might progress in the long term. "If a child had attention deficit hyperactivity disorder before a brain injury, it's very likely that condition will be exacerbated and could affect the child's recovery," says Slomine.
Once therapy begins, children participate in a minimum of three hours of daily therapy, with the therapeutic approach generalized to the whole day. In addition to the use of "traditional" forms of therapy, the program is expanding its use of more advanced technologies such as partial weight-supported walking and functional electric stimulation.
While in the unit, the Frost children followed very different rehabilitation plans. Graeme worked mostly with occupational and physical therapists and speech-language pathologists. Because his vocal cords and the left side of his tongue were paralyzed, he spent a great deal of time learning how to swallow and to be able to speak without stopping to take breaths between words. He had virtually no cognitive symptoms he knew what he wanted to communicate, but needed help regaining the skills do so. He also worked with a counselor to address the anxiety he developed, particularly in anticipation of undergoing magnetic resonance imaging (MRI).
With Gemma, therapists focused on helping her relearn the tasks of daily living: dressing, brushing her teeth, how to communicate, how to identify her feelings.
After several months on the inpatient unit, both children made great strides. Graeme was talking clearly, eating small amounts of food by mouth and walking on his own. He also regained much of the control over his muscles in his eyes, which had turned in. Gemma could get up on her own, get dressed, follow commands and communicate with others. She also underwent the reconstructive surgery she needed for her eye at Johns Hopkins Hospital, which is connected by walkway to the Kennedy Krieger rehabilitation unit.
"Despite all the progress they'd made, they still weren't ready to go back to school," their mother Bonnie says. "Gemma needed help with speech, and Graeme needed more occupational and physical therapy. That's when they moved to the Specialized Transition Program."
The Specialized Transition Program (STP) segment of the rehabilitation continuum is a rehabilitation day hospital that strives to transition children and adolescents undergoing intensive neurorehabilitation services back into home, community and school life. STP is appropriate for patients who no longer need round-the-clock medical care, but require a degree of therapy that makes full integration into home or school life unfeasible. Children come to STP from 8 a.m. to 3 p.m. five days a week, usually for several months. In addition to needed therapies, including those integrating advanced rehabilitation techniques, children also continue with schoolwork as much as possible, relying on the services of special educators. By working in groups and practicing taking turns and paying attention, children can prepare to return to school. In many respects, the classroom serves as a laboratory for the development of educational strategies that will be key in easing children's transition to their community schools.
"The STP model gives parents an opportunity to learn what their child can or cannot do at home, and how the injury may have affected the child's personality," says Joan Carney, director of the Specialized Transition Program. This provides support to the family during this period of adaptation, allowing them to work with the therapy team to address new areas of concern. "We can also provide therapy homework' and strategies to help parents continue their child's therapy at home, on their own," Carney adds.
Discharge depends on the child's rate of progress. Once the child begins to need fewer daily therapy interventions and recovery starts to stabilize, families can think about helping their child transition back to school. "Most schools aren't prepared to respond to rapid change in a child's abilities," says Carney. "We usually don't suggest leaving STP until we have a pretty good idea of what the child's long-term abilities will be."
Graeme left STP after a month, Gemma stayed for three and a half months. "She just doesn't learn the same way she did before," says Bonnie. "So she needed a great deal of attention from her teacher."
Even after leaving STP, children recovering from brain injuries usually continue on in the rehab continuum in the Home and Community Rehabilitation Program, Pediatric Rehabilitation Clinic, or both. The Home and Community program provides ongoing therapies in the patient's home and shares strategies for optimizing a patient's independence. Members of the Home and and Community team meet regularly to discuss patients, ensuring coordination of care. The Clinic is an outpatient program that provides follow-up evaluations and care for children who no longer need such intense therapies.
Both Gemma and Graeme continue to receive therapy, but both have resumed the active school and social lives typical of most children their age. Graeme is back in the same private school he attended before his accident. He currently can't participate in contact sports where he might injure his head, but otherwise has no restrictions. Gemma now attends a school for children with learning disabilities, but continues to make tremendous progress and has had sleepover parties with friends she knew before her injuries.
Gemma and Graeme's recoveries aren't complete yet both continue to face challenges neither they nor their family could ever have expected. But each day also brings with it unexpected progress, such as the return of skills thought lost forever, or parts of their personalities not seen since the accident. "If it hadn't been for Kennedy Krieger, and the remarkable way their team made sure the kids started all those intensive therapies while they were still in the hospital, there's no way either Gemma or Graeme would be where they are today," says Bonnie.