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 has a chance of turning 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 biennial 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!!
Surgery #3/5 was a few months later, on August 17, 2011. Brooklyn got one expander in her scalp, for the beginning of round #2. I filled her bubble every week for a few months; and our conclusion to round 2 ended on October 27, 2011. We thought we would just need one last touch-up surgery, but because of the 2 rounds she had, her right forehead/eyebrow was pulled up significantly so her face was asymmetrical. When we attended the Nevus Outreach conference in July 2012, I was told that we would need to do another round of expanders.
Why this news was so hard for me to take in is still baffling to me. I think that because I'm such a planner at heart, and I'd always planned on 5 surgeries...both financially and mentally...and to have it now be 6 surgeries, it was just really difficult for me. I'm not gonna lie. I cried...and I cried hard! But we do what we have to do...and we started her 3rd round. Her 5th surgery was December 8, 2012 to insert an expander in her forehead. Removing that expander was surgery #6 and finalizing round 3 was done on February 8, 2013.
Again, after sending some pictures of her healing, her scars, symmetry, forehead, scalp, etc, it was decided that she needed one last round to finalize everything out and lower that right eyebrow. The dates of these surgeries were October 20, 2014 and December 29, 2014. And now...we're done. :)
Her nevus technically didn'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 chose to have it removed. It was so scary. I was dreading the surgeries, the expanders, and everything that came with it...but I was optomistic about the outcome, so that's what kept us going.
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!