My oldest daughter has a rare skin condition called GCN or CMN, most of you know this and there is info elsewhere on the blog if you want info on that specifically. We are in a Network, mostly through Facebook, where we can gain support and share information regarding this condition, and we are able to gather physically every 2 years with other families affected by GCN/CMN for information and support. A little over a month ago, while we were in the hospital having expanders placed and an infection treated by IV, there was apparently a big uproar in one of the Facebook groups about the ever daunting question: TO REMOVE OR NOT TO REMOVE. I did not see the 'explosion' on the 'big group', I only saw it mentioned in the 'small group' and I believe it was so negative that it was removed before I could read it on the 'big group'. Anyway, just the thought of it upsets me, because we chose NOT to REMOVE! When our daughter was a baby we made the choice to NOT REMOVE her giant birthmark from her back. We were very happy with our decision but still respectful of the people who chose to remove. It seems some people are unable to see that there are 2 CHOICES when it comes to CMN/GCN and that EITHER choice is the RIGHT ONE!!! When our daughter was 6 years old she started injuring a small area of her Nevus on a regular basis and the decision was made to do a small surgical expansion round to remove just that small area. I still did not think of us a 'removal' family. This summer we went to another conference/reunion where many of my daughter's mentors do not have their nevus removed and enjoyed our time immensely. About a month after the conference and her 8th birthday, my daughter decided she wanted to remove a bit more of the nevus. HER CHOICE! An appt. with the plastic surgeon was made and we began planning. A couple months later she decided she wanted to remove as much as possible by having more expanders placed at the same time. HER CHOICE! At 8 years old, this young lady has expereinced more in her lifetime than many adults. She understands more medical jargon than some first year med school students and makes choices that would have CEO's shaking in their loafers. In 20 years will she be happy with the choices SHE MADE when she was 8? I hope so.
MY CHOICE was to leave her birthmark alone.... HER CHOICE is to remove it. I don't care which of us is right!! I want my child to be a happy grown-up and if she thinks that removing her birthmark in childhood will help her adulthood be happier then I support her. 100%. No doubt. Not my choice. I have raised her and educated her as best I can. Prepared her to make choices that she believes in and support her to the depths of the sea every moment that she doubts her choice. She is, after all, only 8 years old. There are a couple adults in our 'network' who's PARENTS CHOSE 'leave alone' and then when the Nevus OWNER grew up, they CHOSE REMOVAL. Yes, removing would have been easier when she was a baby/toddler. But those adults who did removal in their 30's are thinking it would have been easier when they were 8 (I think anyway). I pray my daughter doesn't regret her choice 20 years from now.... but I have peace in the fact that is was HER CHOICE, not mine.
***This is just MY OPINION, please don't misconstrue this as being the opinion of all Nevus affected families. These are MY THOUGHTS and not meant to convince or offend anyone!
