How a Nevus changed my life

If you know what a Nevus is, fantastic. A word before getting into it. This is one of my longer posts, and also one very personal to me.

There are some things you experience in life that you never forget. Learning to ride a bike, your first love, or maybe traveling to a foreign land. One of these experiences for me was the birth of my daughter. 

The birth of a child is an amazing experience. Of course I am speaking from the point of view of the father. It is an experience that many people have every day, but every one is amazing. Somehow though my experience got to be a little different than most.

My daughter was born with a Congenital Melanocytic Nevus. She is covered from the top of her head to the bottom of her feet in many different sized moles. The biggest mole is on her lower back. It covers the width of her back and goes from her lower back to the top of her buttocks. 

The funny thing is when she was born I didn’t even notice them. They got her to cry and brought her over to clean her off and do all of the measurements. I was right there watching the whole time and it never crossed my mind that something was there that didn’t belong. After they got her cleaned up they said the doctor would be in to have a look at her spots. That kind of caught me off guard. I asked “what spots” and they pointed them out to me.

At this point I’m not really worried about anything. Yeah I didn’t know what to expect, but my baby was alive and seemed fine. I couldn’t be any happier. That was about to change.

The doctor came and she had a look at my little girl and had no idea what she was looking at that was all over her body. Everything was fine with her, but she had moles all over. Later that day the doctor returned to our room with a book. In the book she was turned to a page that was referring to Nevus. The only thing I read that I can remember to this day was that the life expectancy of one with this condition was three to five years.

It still makes me nearly cry. Who the hell was this woman coming in here and showing me this? Claims to be a doctor, but I think she’s whack. It’s not the easiest thing to do, telling yourself that you’re going to have to prepare yourself for this situation if the time comes. 

I wasn’t having it though. I refused to let myself believe that this was the case. Fortunately I have an amazing wife, and together we willed our way forward. After her birth, taking her home, and her first visit with who would be her pediatrician we were referred to a dermatologist. Finally some good news.

Apparently the doctor at the hospital had some old reading material. Studies have come a long way. Since the beginning my daughter mostly has seen just a plastic surgeon. I will say though that she has been a real trooper about it. 

Now I don’t want you to think that we were trying to remove all of her moles. To be honest we’ve hated having to remove any of them. The only time we have has been when they started getting darker or changing shape/size. 

My daughter knows she’s beautiful and embraces her “spots” or “angel kisses”. Those are her terms not mine. She’s had a few places that bothered her at different times that had to be removed. The others were just changing too much. Underneath the larger Nevus on her back she had some fatty tissue ball up and that bothered her. We had those removed as well. 

Nevus is something that doesn’t just go away. It is something that most people aren’t even aware of. If I remember correctly the statistics for someone with a Nevus like hers is 1 in 50,000. To me she is one of a kind. I have been blessed with an amazing family. A better wife than I could ever ask for, a beautiful sweet daughter, a handsome playful son, and of course the adorable fur babies.

Reach out

Nevus

If you would like to learn more about the topic of this blog I suggest going to the Nevus Outreach website. This is an organization dedicated to researching and raising awareness about Nevus.

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