Brooklyn's Story

This is the story of our daughter, Brooklyn, & her nevus. She was born with a congenital melanocytic nevus on her forehead/scalp. We started the removal process in January, 2011. For more information on nevi's please see the FAQ section. (The link is on the left-hand side of the main blog page.)

Brooklyn Marie was born March 7, 2010 in Lewistown, MT. When she was born we saw there was a darker spot on her forehead & scalp. The doctor said it was a birthmark. She was still covered in gunk so I didn't really think anything of it. If it really was a birthmark I'd thought "No biggy", because her hair will grow and you won't be able to see it. Later that morning the doctor said that it's like a mole, but it will turn malignant so it has to be removed. She said it's called a "hairy nevi".


There's not really anything online about hairy nevi's. All we found was a site with some statistics, that's it! After doing SO much research that I was seeing stars I eventually found a group/site on line called Nevus Outreach Inc. (http://www.nevus.org/). They are a NPO that is for families affected by nevi's. I registered Brooklyn on the site & then went to their bi-annual conference just about 2 weeks after registering her! I learned SO much about nevi's during that weekend.
 
I made up a FAQ section on the blog to answer any questions that may come up when talking about a nevus. If there are any questions that you have that I could add to the FAQ please let me know & I'll add them!
 
So what now??? We had our first surgery (#1/5) on January 6, 2011. Our amazing surgeon inserted 2 tissue expanders under her skin, in the forehead & scalp. I then spent the next 11 weeks inserting saline to stretch the skin. Then the 2nd surgery (#2/5) was March 24, 2011. During that surgery our miracle worker (Dr. Bauer) removed the expanders, removed parts of the nevus, & put the extra skin over where the removed nevus was. 80% of the nevus was removed in that surgery!!

Our last surgery should be about 15 months after this whole process started...around Feb or March, 2012. Her nevus technically doesn't HAVE to be removed. Some parents choose to "observe" their child's nevus. I, however, would never forgive myself if her nevus turned malignant...so we have chosen to have it removed. It's scary. I'm dreading the surgeries, the expanders, and everything that comes with it...but I am optomistic about the outcome, so that's what keeps us going. After going through 1 round already, I still dread the surgeries, but it's very nice to know what's coming & what's in store for us. It's good for us that we've already been through this so we know what to expect.

If you have any questions please let us know! There is also a "Contact Us" page.
 
Thanks for reading our blog & keeping up to date on what we're doing!