'Extraordinary' Experience at Shriners Children’s Boston

“Phenomenal, wonderful, extraordinary,” are just a few of the words that D’Anayli’s father, Dane, uses to describe his family’s experience at Shriners Children’s Boston.

D’Anayli and her parents were referred by her local physician to reconstruct her soft palate and explore additional craniofacial care. “This recommendation has turned out to be one of the best decisions that we made in her young life,” said Dane. “It yielded an effective long-term medical treatment plan for her, and it also draws together a community of caring professionals who cater to her total development, and the development of every child entrusted in their care.”

Dane highlighted the sense of love and empathy exhibited by D’Anayli’s care team as a primary reason for their satisfaction. “I recall being in an exam room for the first time and it was as if the staff were feeling what we as parents were feeling,” he said.

During that first appointment, D’Anayli’s entire craniofacial team was present, offering information, comfort and guidance. Dane recalls learning “some good news and some not so good news” that day about the road ahead, which the family understood would have some challenges. “Their empathy was clear, and I will never forget that first encounter when the team gave my family and D’Anayli the support that we needed. From there we realized that we were going to be in very good hands.”

After a comprehensive evaluation before her first surgical procedure in Boston, D’Anayli’s care team developed a detailed long-term approach that included speech therapy, dental and orthodontic evaluation, and routine monitoring to assess the need for additional craniofacial surgery. Periodic telehealth encounters are a key component of D’Anayli’s care plan. This was particularly important during the COVID-19 pandemic, when travel was greatly restricted.

In their six years of coming to Shriners Children’s Boston, the family has developed strong bonds with D’Anayli’s care team. “All the staff we have interacted with have made an indelible impression on our journey,” Dane said. He highlighted the special relationship that his family has with nurse care manager Sandy Barrett, RN, BBSN, CCM. “From the very beginning, Sandy has been just phenomenal. Her communication is clear, precise and reassuring. She is supportive. She has made everything very easy.” Dane also pointed out the special relationship that D’Anayli has had with speech therapist Martha.

The family’s relationship with Shriners Children’s Boston has also included a willingness to share their experience with other patient families. In 2019, the family participated in an educational seminar at the hospital. During the seminar, Dane shared his perspective as a patient parent. It was an impactful moment for Dane, as he also had the opportunity to learn from other patient families.

Twelve-year-old D’Anayli has many creative interests. She shared that she loves music and particularly enjoys playing the piano. Her artistic talents are not limited to music. She also enjoys drawing and writing stories.

When the family is in Boston, visiting the USS Constitution Museum is at the top of their activity list. Located in the Charlestown Navy Yard, the USS Constitution is the oldest Navy ship still floating. “Every year, we visit. It is interactive and we have toured the ship. It’s something we look forward to when we come to Boston,” Dane said. The family also enjoys visiting the Museum of Science.

Dane said he is grateful that D’Anayli is a patient at Shriners Children's. “We do not take it for granted. We see it as a blessing. You feel a sense of family here. You come here for a specific treatment plan, but the care is so comprehensive that it fosters a holistic development of the child.”