Edwin's Story: Finding a Community of Care at Shriners Children's Boston
Edwin was a baby when he sustained severe burn injuries to his face in his home country of Honduras.
He became a Shriners Children’s patient in 2017, when he underwent surgery at Shriners Children’s Ohio. Edwin’s care was transferred to Shriners Children’s Boston in 2018, and he and his mother, Karla, have traveled there every year since for treatment. According to Karla, they are grateful not only for the care Edwin has received, but also for the community they have built through Shriners Children’s.
When Edwin’s burn care journey began, Karla felt supported by the wrap-around care and extended network of families who had experienced something similar. “It was a good experience for us because we met other people and made good connections,” she said. “At first, I was thinking Edwin was the most affected kid in the world, but after you see other experiences, you realize it's not like that. Seeing the amazing job that the specialists here are doing with other kids made me feel calm.”
Edwin’s care at Shriners Children’s Boston is led by Daniel Driscoll, M.D., a reconstructive surgeon who specializes in facial burn reconstruction. Dr. Driscoll carefully assesses the procedures Edwin requires each year while also looking ahead to future needs. “As children grow, their scars don't grow with them,” said Dr. Driscoll. “Each time I see Edwin, I reevaluate him and determine what problems I need to address. Before he returns home, we try to make a plan for the following year since we don’t have a lot of contact in between visits.”
Over the past few years, Edwin’s scar management plan has included several functional goals. “Edwin’s burn scars caused quite a bit of tightening around his face,” said Dr. Driscoll. “At night, his eyes would remain open because burn scarring had pulled his lower eyelids downward. He also had discomfort opening his mouth. He needed more skin on his face so he could close his eyes, open his mouth better and move his neck with greater ease. At the same time, we’ve done work with lasers to help soften up the skin.”
The outer structure of Edwin’s ears was another area of Dr. Driscoll’s focus. Over time, contracted tissue altered the shape and position of both ears. Dr. Driscoll repositioned his ears and reconstructed areas that were affected, improving appearance and function.
Our children are warriors. They make us appreciate life and they show us how we can be better.
Karla shared that both she and Edwin sometimes feel anxious prior to a trip to Boston, especially if Edwin is scheduled for a complicated surgery. The support of their care team, before and after their arrival, helps to alleviate some of that stress. “They call me and they help me with the whole process for him to get here. Every time we are here for surgeries or other appointments, everyone on the staff is amazing. I'm really grateful for all the doctors here and the amazing care they give Edwin.”
Thanks to the relationships she has formed with other caregivers, Karla is also learning more about the city of Boston and everything it has to offer. “I have experienced a little bit of Boston since I met my friend here at the hospital,” she said. “She's been showing me things to do around the area.”
As a member of Team Brave, Edwin has also enjoyed many new experiences in the Boston area. A collaboration with the Boston Firefighters Burn Foundation, Team Brave helps Shriners Children’s Boston burn patients reintegrate into the community as part of their recovery.
Now 11, Edwin loves sports, especially practicing and playing soccer. Karla also describes him as a compassionate child, something others see when they meet him. “He's always been a loving child. He's really emotional, in a good way. Everywhere we go people love him, and it's not because of the way that he looks, but because of the way that he is towards others.”
Karla and Edwin’s network of support has made Shriners Children’s Boston feel like a true community. “Everyone makes us feel welcome,” said Karla. “It is like a huge family, because we receive support from the staff, but we also support each other.” The experience has given Karla a unique and powerful perspective. “Our children are warriors. They make us appreciate life and they show us how we can be better.”
Edwin (left) enjoys a mini golf outing with Team Brave.
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