Infantile myofibromatosis (IM) is a genetic condition characterized by benign (non-cancerous) soft tissue tumors that can form on the skin, certain muscles, and more rarely on the bones and internal organs. These hard, painless tumors generally form within the first week of life or are present at birth, although in some cases the tumors appear sometime during the first two years of life. Tumors that can be seen on the skin are generally flesh-colored, but some may appear purple. After the initial growth period, the tumors usually disappear on their own without treatment.
Diagnosis can sometimes be made prenatally (before birth) through an ultrasound but can also be made by physical examination after birth. A family history is a good indicator of congenital generalized fibromatosis. Because the tumors are benign, those that are in the skin and muscles are generally not treated unless they become malignant (cancerous). The recurrence rate in cases without organ (visceral) involvement is low, around 10%. Surgery is required if the tumors are on any of the organs or if they appear more threatening. Nonsurgical treatments are also available. If you have a family history of infantile myofibromatosis, or you think your child may have the condition, you should contact your doctor to schedule an examination and to discuss the most current treatment options.