Congenital Giant Nevus Club in Dubai
Variously called Congenital Giant Nevus, Giant Congenital Nevus, Giant Congenital Melanocytic Nevus [Giant CMN], Large Congenital Melanocytic Nevus or similar names, this is a rare condition occurring in 1 in 20,000 births. These children have large dark colored skin patches composed of pigmented melanocytic cells. They are often very hairy as well. The size may be varying from a few centimeters to as big as 60 cm. Any pigmented patch bigger than the baby’s hand or more than 2% of body area may be considered a Giant CMN. Often it is bigger and may cover a large part of one region of the body; for example half of an arm, half of head, upper or lower half of trunk etc. The color may vary from black to various degrees of grey or brown.
The birth of such a baby is usually shocking to the parents and relatives. It is totally unexpected even after proper screening ultrasound checks during pregnancy. The parents are distressed, scared and often do not get proper information from their attending doctors, especially for the question of what can be done to correct this? When and where should they go? What are the health risks and so on.
Medically these children have a lot of problems. The giant patch may occupy the face or trunk or limbs or a combination of areas. This skin is usually hairy, having rough long hairs [animal-like] but it may also be non-hairy at places. It has poor elasticity, is abnormally thin, easily injured and lacks fat. The skin is at increased risk of developing ‘melanoma’ - a dangerous cancer; this risk is 5-10% in lifetime. They have other satellite lesions of smaller nevi often in hundreds, spread across the face and body. Some of these children also have pigmented cells on their brain and spine, this is called neuro-cutaneous syndrome. It may cause epilepsy or tumors in the future.
Psychologically they suffer as well. They may be too shy and withdrawn, may not socialize and may not realize the full potential of their intellect and talent.
The parents are at a loss where to go. Most general doctors, plastic surgeons have never seen these in their careers. Due to the rarity of this condition, especially the really big ones, very few centers have sufficient experience in treating this condition. At American Academy, we are treating many children and have accumulated experience on the best ways of treating their deformities. In the past, the lesions used to be removed and the large areas covered by skin grafting. Although effective, the skin grafts do not look normal. Now, in suitable cases, we are able to expand the normal skin to create enough new skin to cover the defect created by removing the lesions. For this it is best to start early at 3 years of age to take advantage of the growth. Still in a few cases, we may only do skin grafting and resort to such procedures at a later date. We are also currently treating the older skin grafted children to offer them the tissue expansion method.
The relief of parents and later of the children when they begin to understand these things, is a joy to see. We aim to remove their nevi to prevent development of skin cancer and also to rehabilitate them in the society. As part from the American Academy of Cosmetic Surgery Hospital commitment towards the society, we decided to launch the “Giant Nevus Club” and provide the patients with all the counseling and expertise for treatment. There is no such society or club in this part of the world where parents can turn to for reliable treatment.