On a summer day in 2005, 6-year-old Camryn Berry lay on the back porch of her family’s Maine farmhouse, her head in her mother’s lap. When she opened her mouth to speak, life suddenly changed.
“I saw that she had this huge mass in her mouth,” says her mother, Tammy.
A CAT scan revealed a bone tumor about the size and shape of a baseball, growing mostly in Camryn’s sinus. The specialty care Camryn needed is not available in Maine, and Camryn’s doctors recommended MassGeneral Hospital for Children. Within a week of the discovery, the Berrys were in the office of Leonard B. Kaban, DMD, MD, Chief of the Department of Oral and Maxillofacial Surgery at MassGeneral Hospital for Children and the Walter C. Guralnick Professor of Oral and Maxillofacial Surgery at the Harvard School of Dental Medicine.
The diagnosis was fibrous dysplasia, a rare condition caused by a gene mutation in which bone develops abnormally, forming a fibrous mass that can grow over months or years, weakening healthy tissue, causing deformity and, occasionally, functional problems and pain.
“Fibrous dysplasia may grow throughout childhood but eventually, in the late teens, the growth slows down and the disease becomes quiescent. Therefore, we generally wait until the growth slows down or stops,” says Dr. Kaban, “and then we do an operation to contour the abnormal bone.”
But in Camryn’s case, the tumor was also obstructing her nose, causing difficulty breathing and excessive tearing. She also had headaches, and the mass produced a facial deformity. She is being followed by neuro-ophthalmology in case she develops visual problems from the extension of the fibrous dysplasia into the orbit.
In collaboration with Camryn’s family, her multidisciplinary surgical team at MassGeneral Hospital for Children decided the time was right for surgery and scheduled an operation to re-contour the bone to make her face more symmetrical, improve her breathing, and clear the obstruction of her tear duct.
“We admitted her to the hospital, did the operation, and she’s done very well since,” says Dr. Kaban.
There is a substantial likelihood Camryn will need more surgery before she reaches maturity and the tumor stops growing.
“We’re still watching her because this still has the potential to grow,” says Dr. Kaban, “In young girls, fibrous dysplasia typically starts to grow when the children reach puberty or when they have their first menstrual period. For other girls, it may grow if they take birth control pills or if they have a baby–hormonal changes tend to make it grow. So we will follow her over time–we didn’t necessarily cure this, but we de-bulked it enough so it’s improved the way she looks, eliminated the functional problems, and allowed her to breathe better. She’s very happy with that.”
“Dr. Kaban’s great,” says Tammy, “Camryn loves him. She thinks he’s the greatest doctor in the world. He’s very good, very professional–you just know from talking to him that he knows what he’s talking about, so that makes us feel pretty comfortable.” Today Camryn is feeling like her old self and back to her normal activities–playing with her friends, turning out for soccer and basketball, and writing and illustrating a 55-page picture book about a lost cat that’s adopted by a girl named Debbie, after Dr. Kaban’s office manager, who became good friends with Camryn.
“Our view on life is we don’t worry about things before they happen, we take each day as it comes,” says Tammy. “Camryn has a childhood to live and we want it to be as normal as possible.”
Patient Story5 Minute ReadMay | 16 | 2019