When bodies produce too much bone, noncancerous tumors called osteochondroma can grow on cartilage and bone along the growth plate of a child’s body. Osteochondromas can be associated with a reduction in skeletal growth. Some children have more than one isolated tumor, which is called multiple hereditary exotoses (MHE). These tumors can often be painful and can cause nerve damage. This condition is often hereditary and usually develops by puberty.
The Hopson family
Kendra, mother of the Hobson family, knew there was a good chance her children would develop MHE becasue her husband had the condition. When she found out both children had an osteochondroma before the age of 3, she searched for physicians who treat the condition. Living in Fayetteville, Arkansas, the Hopsons had a great children’s hospital close to them, in Little Rock, Arkansas. However, they wanted specialized care for their family and therefore began an internet search. Four years ago, their search led them to Shriners Hospitals for Children — St. Louis.
When they arrived in St. Louis, the Hopson siblings had visits with upper extremity specialist Charles Goldfarb, M.D. In his blog, congenitalhand.wustl.edu, Dr. Goldfarb explains how genetics play a role in developing these tumors. “There have been three gene mutations (and potentially others) associated with the development of multiple hereditary exostoses; these mutations affect the gene encoding EXT1 (at 8q24), EXT2 (Chromosome 11) and EXT3 (Chromosome 19),” Dr. Goldfarb explains. “Almost all patients develop multiple hereditary exostoses because they inherited it through one of these genes. The genes are autosomal dominant so there is a 50 percent chance a child will inherit this disorder if one parent has it.”
Now ages 16 and 14, the siblings have each had seven surgeries at Shriners Hospitals for Children — St. Louis. Some surgeries help remove the tumors while others help alleviate the surrounding areas from nerve damage from the impending mass. One symptom of osteochondroma is limb length differences. Kendra's daughter had an external fixator placed on her arm to straighten and lengthen it an additional 3 inches. Kendra was especially impressed with how the surgeons consider the patient’s opinions before surgery. “I love it here. They are great with my kids,” Kendra says. “They let the kids choose if they want surgery.”
It has not been an easy road for the Hopsons, but with careful removal of the growths, they are hoping that by the time they are adults they will not have to worry about cancerous growths. The all-too-present reminder of this is that their father passed away at age 32 from a 25-pound cancerous tumor on his lung.
Osteochondroma can be detected through a variety of scans of the bone. The exact cause is not known, but with careful treatment, children can often live very full lives.