Here’s how one hospital is helping children affected by tragedy and setting the standards for burn care.
By Leslie Fischer
Just after midnight on Christmas Eve 2011, 9-year-old Makiah Barclay woke to hot plumes of fire igniting her pajamas and melting her skin. On a night that should’ve been spent dreaming of sugarplums, Makiah and her family faced tragedy when their house was engulfed in a fire that killed her grandmother. In the wake of the horrific events, Makiah and the rest of her family began the long road to recovery, which started at Shriners Hospitals for Children-Northern California. Shriners’ team of specialists in pediatric burn care were there to help when Makiah arrived at the hospital with second- and third-degree burns covering nearly 50 percent of her body. She also had a collapsed lung that needed to be stabilized.
With the support of specialized burn care professionals during a three-month hospitalization, Makiah began taking steps toward normalcy. “Soon after the incident, Makiah had her first two skin grafts,” says Todd, her father. “She had a third surgery to release the skin around her pinkies, thumbs, wrists, elbows, and armpits, upper torso and face, where she was most severely burned.” Makiah would later receive daily physical and occupational therapy, too.
For children like Makiah who suffer from severe burns, the effects can spread far deeper than the affected tissue. To help patients heal completely and not just physically, the team at Shriners uses a holistic approach. By integrating occupational, physical and respiratory therapies with dietetic, psychological, pharmaceutical and child-life care, they enable patients to achieve the best outcomes for returning to normal life stages and tasks. “Our philosophy is that we take care of the whole patient throughout the entire spectrum of care,” says Tina Palmieri, M.D., assistant chief of burns. “We treat them immediately after injury, but also help rehabilitate them mentally; helping patients to fully adjust back into society.”
With little support previously available to them to discuss the stresses of the unknown and long-term care options, the Barclays were relieved to find a compassionate, listening team at Shriners. “They had counselors ready to meet with us and see how we were doing as a family,” Todd says. Makiah participated in art therapy sessions and play groups, and she was treated to a group outing to Disney on Ice.
In addition to helping patients like Makiah and others treated at Shriners, Palmieri’s work extends beyond the walls of the pediatric clinic. She has developed resources for the U.S. Department of Defense that set the standard for burn care protocols in large accidents. In disastrous situations where hundreds are burned at once, the need for care will outpace resources available, Palmieri says, so she developed response guidelines based on priorities of care.
By studying current prioritization standards through a pediatric lens, she formulated a table for triage that considers all populations and is available in times of disaster. Before this work, she says there was no solid data that appropriately considered specific care nuances for children. This standardized model will help provide valuable results for kids throughout the United States.
Along with her disaster preparedness work, Palmieri is developing resources to improve long term outcomes after injury such as a pediatric recovery chart for burn outcomes. By plotting patient progression on a chart of burn-specific recovery milestones, general pediatricians can more easily prescribe appropriate care. Palmieri was also instrumental in the creation of the National Burn Repository, the largest collection of burn outcome data in the world. The voluntary registry is made of more than 3,000 records of burn victim data and is maintained by the American Burn Association. This resource provides insight into care, and is the basis for many Department of Defense grants.
Putting this research to use and helping patients return to normalcy is the goal for every patient who comes through the doors of Shriners burn unit. Two years after the accident, Makiah is a thriving fourth grader and athlete. She recently finished her first junior triathlon, making her triumphs outside the hospital the ultimate measure of success. “To see a child we’ve treated excel in life is the greatest gratification I could ever have,” Palmieri says.
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