Eithan was born with Goldenhar syndrome, a rare congenital condition that affects the development of a child’s face, skull and spine. The compassionate care and supportive community at Shriners Children’s Boston have helped both Maziel and Eithan navigate his treatment, leaving them with great affection for the hospital and the city of Boston.
Children with Goldenhar syndrome often experience underdevelopment of one side of the face. A common symptom is microtia, a condition in which the external ear is not properly formed. In Eithan’s case, his left ear was much smaller than his right.
When Maziel sought craniofacial treatment for Eithan at home in the Dominican Republic, a friend told her about a foundation that might be able to help. Maziel secured an appointment for Eithan to be evaluated and learned he was a candidate for surgery. The foundation helped to connect her with Shriners Children’s Boston. Prior to their first visit to Boston, the care management team became Maziel’s main point of contact. They assisted with travel arrangements and helped to schedule Eithan’s surgeries, as they have done every year since.
Daniel Driscoll, M.D., a plastic surgeon at Shriners Children’s Boston, is Eithan’s primary surgeon. Dr. Driscoll specializes in facial reconstruction for children with burn injuries and congenital conditions. “Eithan had a type of microtia called a cup ear deformity, causing a folded appearance,” said Dr. Driscoll. “Luckily, he had no issues with his hearing, and the structure of his inner ear was intact.”
According to Dr. Driscoll, Eithan’s treatment required a phased approach. Through a series of reconstructive surgeries, Dr. Driscoll created a framework for Eithan’s left ear, made refinements to the outer structure, and then grafted skin behind the ear to properly position it away from the head.
All of the doctors and nurses and everyone that has taken care of Eithan take their time and make sure that his needs are met.
Since Eithan lives far away, his treatment is carefully planned to achieve the best results during each trip to Boston. Maziel was grateful to have their latest visit extended to accommodate an added procedure. “Our care manager, Danielle, was able to switch our flights and make arrangements for us to stay,” she said. “All of the doctors and nurses and everyone that has taken care of Eithan take their time and make sure that his needs are met. Our experience has been a 10 out of 10.”
Although Eithan misses his family when he is in Boston, he has come to love his visits to the city and the hospital. He and Maziel have formed friendships with other children and families, making it a little easier to be so far from home. “I was able to meet another Dominican, and she comes from the same place where we come from, so now it's good to feel that I'm not the only one here,” said Maziel. Added Eithan, "I like the cold weather that's always here, and I love being in the snow. I love everything about Boston, and sometimes I don’t want to leave.”
Maziel wants other families to know their children are in good hands at Shriners Children’s Boston. “I would tell others that they can expect very good outcomes here,” she said. “Every single time we've been here, Eithan comes out of surgery very excited because he wants his left ear to look the same as his right.”
In addition to meeting other patient families, Eithan and Maziel have deep appreciation for their care team and the bonds they have developed over the past eight years. “I always tell Dr. Driscoll, ‘Eithan is your son now, too, because he's part of the hospital, so now he's also yours.’ I'm very happy with the treatment we've gotten here, and I'll continue trusting the hospital. I'm grateful for everything.”
