Evan Robert Gill

I toggled with the thought about writing a blog, mostly because I wasn’t sure if I would be able to keep up with it. A few friends and family members suggested it as well, and I realized it would be a great idea to not only keep them informed on Evan’s progress, but also to educate other parents who might not know much about congenital nevi.

Evan was born on Thursday, March 29th around 3:30pm. I remember my midwife commenting on a birthmark, stating, “these are normally on the back of the head”. I didn’t think much of it as I was elated to have this beautiful healthy boy in my arms, plus, the lights were relatively dim and he was full of slime and his skin was rather purple. Jeff and I had never seen this type of birthmark, nor did we know anything about the associated risks. We spent hours studying what the birthmark was, and were trying to mentally and emotionally prepare ourselves for a life of explaining to Evan why he was different. It wasn’t until the hospital pediatrician told us it would need to be removed, later realizing it does carry a risk, albeit small, of turning into malignant melanoma.

Our removal journey began when Evan was just six weeks old. We met with “the” children’s dermatologist who diagnosed him with a congenital hairy nevus. We were told that the chances of his birthmark becoming malignant were roughly 5%, which we had previously read. With such a small percentage, we talked about leaving it and feared removal would leave an unsightly scar, but we worried about that small percentage as well as physiological impacts. Our next step was to meet with 3 of DC’s best pediatric plastic surgeons. Each surgeon suggested a different path for removal; serial excision, tissue expansion, and skin graft. All doctors (including his derm) said to absolutely avoid the latter, but the doctor who recommended it was top rated and had an incredible resume. We left each appointment with high hopes, only to be confused when the opinion changed at the next visit. We continued our online research (dangerous) and I came across a blog from a mother who had a daughter with a facial/scalp nevus. I read this blog in the hospital shortly after Evan was born but had forgotten about it. I reached out to her directly, and she pointed us in one direction – Dr. Bauer, located in Chicago. The more research Jeff and I did on this particular doctor, the more we realized that he was not only the best in the US, but notably the best in the world. And best of all, he did email consultations. I sent him a picture of Evan and got an immediate response. He explained to us why skin graft would be a poor choice, and explained why tissue expansion would be the way to go. Next thing I knew, we booked Evan for surgery in late September with a second surgery the following December. The waiting game began!