A Chance Encounter Leads Family to Shriners Children's Boston for Craniofacial Care

July is Cleft and Craniofacial Awareness Month, and we are highlighting the experiences of patients like Zachary.

Mary Ann had no idea that her son Zachary would be born with a cleft lip. “I was very grateful for that,” she recalled. “If I had known, I think I would have dwelled on it too much during my pregnancy.”

Zachary was born in September and the family’s path to receiving care at Shriners Children’s Boston began with a chance encounter that November. Mary Ann took Zachary to see Santa at the local mall and Santa happened to be a Shriner. He recommended Mary Ann contact Shriners Children’s headquarters in Tampa, Florida, to learn more about the craniofacial care offered by the healthcare system. Zachary’s great-uncle was also a Shriner and he connected the family with the Oasis Shrine Center in Charlotte, North Carolina. The Shrine Center worked with the family to facilitate transportation to Boston.

Zachary’s first visit to Shriners Children’s Boston was in February of 2008 when he was 5 months old. Mary Ann knew immediately that her family had found the right place for him. “We felt truly at home with the care team in Boston,” she said.

The Cleft and Craniofacial Center at Shriners Children’s Boston is a collaborative program with MassGeneral Hospital for Children. In a single visit, patients have access to oral surgeons, plastic surgeons, orthodontists, speech pathologists and dietitians. Kavitha Ranganathan, M.D., is co-director of the center. “The comprehensive care that we provide at Shriners Children’s Boston is beneficial to patients like Zachary, who will receive care throughout his childhood. As he grows into adulthood, he will have access to all of the craniofacial services that he needs,” she said.

Now 15, Zachary has had a number of surgeries to address his craniofacial differences. Over the years, Zachary has had his cleft lip and cleft palate repaired as well as rhinoplasty, which helped improve the functionality and appearance of the nose. Zachary’s most recent surgery at Shriners Children’s Boston was a bone graft. This procedure involves taking a small amount of bone from the patient and grafting it around the area of the cleft. A bone graft helps to support the child’s teeth as they develop, which is important for overall health.

Zachary is coming to Shriners Children’s Boston annually for evaluation until he is ready for jaw surgery in a few years. Also known as orthognathic surgery, this procedure repositions the jaws to improve bite and appearance.

Zachary and Mary Ann feel supported by their entire care team, from the doctors and nurses to the cafeteria staff in the Blossom Café. “I love the food,” Zachary said. “Every time we come up the first thing we do is get lunch.” Mary Ann shared that when they returned to the hospital for a checkup after Zachary’s bone graft, he was very hungry.

Zachary had dietary restrictions because of the surgery. “I asked the people in the cafeteria if there was anything they could blend for him. They did and I had one very happy little boy,” Mary Ann said.

Zachary remembers playing with all the toys in the play area after his bone graft surgery. “My mom still has the teddy bear I got from Shriners that day,” he said.

Mary Ann especially appreciates how responsive Zachary’s care team is when she has questions.

“All the doctors in Boston will always answer all my questions and always get back to me no matter what it is. Since we live in North Carolina, the care team in Boston is great about getting everything we need to doctors at home. Even though Zachary’s jaw surgery is a couple years away, we are already talking with his orthodontist in North Carolina to make sure everyone is in the loop,” she said.

While explaining why Shriners Children’s Boston is such a special place, Mary Ann had this to say: “We always think it is amazing how all the nurses can always remember him and several have been there since our first visit to Boston. You do not see that too often. This journey could not have been possible without knowing we had such great support from all the people on his care team in Boston.”

Mary Ann has some compelling advice for other families managing a craniofacial diagnosis. “Trust your parent instincts, always ask questions even if you think they are dumb, and know that your child is stronger than you think. I have always told Zachary since he was very little he is stronger than I am and his cleft is not a weakness, it is a strength.”

Now in high school, Zachary loves football and hopes to play at a Division 1 school as a defensive tackle. He loves the outdoors, in particular, camping, hunting and fishing. In reflecting upon his experiences, Zachary had some powerful words to share: “Even though you are born with these craniofacial differences, you can still do and be anything. Be proud of who you are. Don’t let others bring you down. Scars are a sign of being strong. Talk to your parents, friends or doctors.”