Finding Community at Shriners Children’s Boston

Emily was just 5 when she became a Shriners Children’s Boston patient after sustaining serious burns from boiling water.

Her family felt immediately supported by the community of care, drawing strength from the doctors, nurses, and child life and rehabilitation staff who helped them every step of the way during Emily’s treatment and recovery. Emily, now 9, and her family have become involved in the Boston Haunted Walk as a way to show their gratitude for the life-changing care they received at Shriners Children’s Boston.

After her accident Emily was taken to Massachusetts General Hospital, where it was recommended that she be transferred to Shriners Children’s Boston. Emily was first seen as an outpatient for frequent dressing changes. She was then admitted for skin graft surgery a few weeks after her initial injury. In addition to her skin graft, Emily has had seven laser surgery procedures for her burn scars.

Emily’s mom, Jacki, recalled what a stressful and scary time it was for their family as they learned the severity of her injury and what her treatment would entail. She credits the patient-centered care at Shriners Children’s Boston for helping them all navigate this challenging time. “It’s such a high level of care and it’s so consistent,” said Jacki. “You feel the genuine care from everyone you interact with the moment you walk in the building. It feels so holistic and patient-centered. If we had questions they would find someone who had the answer. I had a person to go to for everything.”

The support of the child life team was especially helpful to Emily and her family. Child life specialists Hillary Smith, MSW, LCSW, CCLS, and Rebecca Wildes, MS, CCLS, made a direct connection with Emily. “I can’t imagine going through this without them,” said Jacki. “They were so good with Emily and really involved her in her own care. She was anxious, but with their support she felt like she had some control in her appointments and could advocate for herself.”

Nurse Jeanne MacDonald, or “Miss Jeannie” as Emily calls her, is another care team member that the family fondly remembers for going above and beyond. Jeannie gave Emily a special stuffy during her treatment that she still has today. “She told me recently, 'This reminds me of Shriners, but the good parts,'" said Jacki.

As Emily has grown, so has the care she’s received at Shriners Children’s Boston. When she was preparing to attend her first summer camp, she expressed to her care team that she was feeling self-conscious about wearing a bathing suit because of her burn scars. The child life team scheduled a visit with Emily to talk about strategies that could help her feel more comfortable at camp. “It empowered Emily to advocate for her needs at camp, while also helping her to feel more comfortable with her body,” said Jacki.

Jacki describes Emily as a fun and silly 9-year-old who loves reading, arts and crafts, and being with friends. She still has periodic follow-up appointments at Shriners Children’s Boston, and enjoys seeing members of her care team during those visits. “Everyone talks to Emily when she comes in and tells her how excited they are to see her,” said Jacki. “Dr. Sheridan always comments on how tall she’s getting, and how well she’s healing. She’s in a good place now.”

Emily’s family participated in the Boston Haunted Walk last year to show their support and appreciation for the care she has received. They have plans to participate again this year, and to get more friends and family involved. “We have so much gratitude, and we want to help support other families who are in a similar or even more difficult position,” said Jacki. “Our participation also helps Emily to stay connected to Shriners in a different way. It’s important for her to feel the sense of community by being a part of it.”

Jacki has these word of advice for other families experiencing something similar. “I understand how difficult it is, but know that you are in the best hands possible,” she said. “There is no such things as a stupid question, and if you reach out you will get an answer. At Shriners you always have a partner in your child’s care.”