|Joshua, 11 days old|
Over the past year, Joshua's family has gained momentous amounts of medical information and has met other families worldwide dealing with the same condition. Because this is such a rare phenomena (1 in 500,000 babies born have a Giant CMN), most doctors do not know anything about it. Joshua and his family actually find themselves teaching the doctors!
The good news is that, in conducting their research, Joshua's family discovered a surgeon who is literally the best in the world in treating this condition, Dr. Bruce Bauer. They feel extremely blessed being able to bring Joshua to Dr. Bauer, particularly because Joshua lives in Arizona and Dr. Bauer is in Chicago, IL.
The treatment most widely used to treat CMN's is called Tissue Expansion. Dr. Bauer surgically places "expanders," which are like balloons, under the skin, and Joshua's family slowly fills them with saline on a weekly basis to help the skin "proliferate" (grow). After 12 weeks of doing this, Joshua returns to Chicago for removal of the expanders, nevus and nevus tissue, and the new skin covers the removed area.
Joshua underwent his first surgery in Chicago when he was 8-months-old, when he had his first tissue expanders inserted. Unfortunately, Joshua developed a rare bacterial infection, and his first round of expansion was cut very short. They had arrived home after a 16-day surgical trip, only to return to Chicago 48 hours later for emergency surgery to remove the expanders. This was disappointing - especially because it meant that 1) Joshua's treatment would be delayed until wounds from these first two surgeries had healed and 2) Joshua would undergo 6 surgeries to remove his nevus instead of the originally planned 4. However, Dr. Bauer was able to surprise them with removal of a small amount of nevus in the emergency surgery, so it was a positive twist on a negative turn of events and a glimpse into his medical future.
|A few weeks after the emergency surgery with partial nevus removed|
|Right expander wtih 370 cc|
|Left expander with 270 cc|
http://journeyswithjoshua.com/. To learn more about Congenital Melanocytic Nevi, please visit the Nevus Outreach, Inc. website at http://www.nevus.org/.