Andrew's Arrival and What is a Giant Nevus?

Andrew was born on July 18th, 2012. Everything went great. It is much easier the 2nd time around since you know what to expect.  Andrew was born with what is called a Giant Bathing Trunk Nevus, with additional satellite nevi. He is one in half a million. We had NO idea he had this. You cannot see it in an ultrasound. There is nothing that they know of that causes it, it is just a (or one in half a million) chance that your child will have it. There are many words you could use to describe how we felt (worried, shocked, disappointed, scared, etc) when we found out, but I will just use the word SHOCKED! We may still be a little shocked to tell you the truth. At least I am.

I knew that something was wrong as soon as Dr. A pulled him out (I had a c-section). No one was saying anything. I kept saying why isn't he crying (which turns out he did, so that was no big deal). But Jud wasn't answering any of my questions and everyone was just quiet. The anesthesiologist kept telling me "you have a beautiful baby boy" over and over. I asked Dr. A if he had syndactly (which we expected since me and Luke both have it), and he said yes, so I just thought all the quietness was people looking at that.

Now remind you, I had a c-section so all I can see is a blue sheet in my face. OK...so I hear Dr. H (the pediatrician) say to Jud "I don't know I have never seen this before!" That is when my heart sank. He has been doing this for 20-30 years and he says that! I knew then it was something big. FINALLY, Jud came over and told me "he just has a large birthmark across his waist." That is about all I remember because I think the anesthesiologist knocked me out at this point b/c I went to sleep and slept during the rest of the c-section (which I didn't do for Luke, I just layed there and talked to the doctors during Luke's).

So, there is the short story of the arrival. I have since made some friends whose kids have nevus's as well and are going through the removal process. I am attaching one of my (new) friends blog post she did explaining what a nevus is. She did a much better job than I could. The picture at the end shows part of Andrew's back. It wraps around to his stomach as well. He also has lots of additional satellite nevi over his entire body.

So here is my friends post. She wrote this when her son was the same age as Andrew. Her blog is http://journeyswithjoshua.blogspot.com/ if you want to see her son now:

Mommy and daddy spent the first couple of weeks after I was born seeing doctor after doctor so that they could learn all about my condition, and determine if it could be treated. They are happy for me to share the information they have learned with you.

So, by now you're probably asking, "Exactly what is a Congenital Melanocytic Nevus?" Mommy and daddy certainly were, because they had never heard of it before I was born either. Indeed, this condition cannot be predicted in pregnancy, so the first they learned of it was when I was born. Well, I'm about to give you all the goods on this special skin that I was born with, and just to satisfy your curiosity, I'll include a picture. Mommy says to warn you that it is rather graphic, being on my rear end and all. So I'll put the photo at the bottom of this post in case you'd rather not look.
Ah ha! Caught you -- you looked! Well, let me first say that it's not as bad as it looks. First of all, it doesn't hurt me. Second, no, I don't mind you looking. When I go to the doctor, a bunch of student doctors come in just to check out my behind. It makes me feel so special. And how else will you learn about CMNs if you don't know what it looks like? Finally, I feel very fortunate, because my CMN is small enough to be removed. There are lots of others out there with a CMN over a much larger part of their body, and those cannot be treated.

Ok, so now it's time for CMN 101. A CMN is basically a giant mole. It is dangerous because it could become malignant, developing melanoma. As I said before, my CMN is borderline between the Large and Giant classification, which has a 0-10% risk of melanoma. That is why it is so important that I get it removed. No one knows exactly what causes it, either. Now, here's some shocking information -- a Giant CMN only occurs in 1 in 500,000 births! See how special I am? I'm 2 in a million!

A CMN has several parts. There is usually the large part, like the one on my back and bottom (although it can be anywhere on a person's body). My dermatologist calls this "the mothership." Then there are "satellites," which are (on me) the smaller circular sized ones above the mothership and on my thighs. I have a lot of satellites, and most of them won't be removed. So far, the majority just look like little freckles, and I hardly notice them.

Then, there is a much more difficult aspect of a CMN -- a condition called Neurocutaneous Melanocytosis (NCM), which is a serious neurological disorder. This happens when satellites develop on the brain and/or spine. We won't know if I have this until I undergo an MRI, which the doctors won't do until I am three months old because they have to put me under general anesthesia. My MRI is scheduled for August 5 -- concidentally, my three month birthday. If you'd like to throw an extra prayer my way, I won't mind. But so far, the doctor has no reason to believe I have NCM. I'm keeping my fingers crossed and prayers going, though.

Here are a few other interesting facts about my CMN:

* I have TWO, count 'em TWO, DNA profiles -- my regular one and my nevus one. Bet you didn't think that was possible!

* I have no sweat glands in my nevus skin. So mommy has to watch that I don't get overheated, especially living in sunny Arizona.

* My nevus skin is very delicate and can easily get hurt so I have to be careful with it. Good thing it's mostly on my bottom!

Ok, now the question is, "How does a doctor remove this thing?" You won't believe it! The science behind the surgery is so impressive, and I am excited to be a part of medical history here. The process is called Tissue Expansion. First, "expanders" will be placed under my skin in a couple of places (probably over my lovehandals -- even though I technically don't have those yet!). The expanders are like balloons, which my mommy and daddy will slowly fill with saline over 12 weeks' time. This will stretch my good skin out nice and far. When the 12 weeks are over, the doctor will take out the expanders and cut off part of the CMN, stretching the new skin to cover it. Isn't that amazing? The doctor says I will probably have to repeat this procedure at least twice, and then will maybe need some reconstruction after that. So, it's looking like 4 surgeries for sure, probably 5, and possibly 7. Let's hope for no more than 5! The good thing is that the first four should be done before my second birthday, and I'll never remember them.

Well, that is a lot of information for me to share right now. I hope you have enjoyed learning about it as much as I've enjoyed teaching you. I am so blessed, because my mommy and daddy found me the best surgeon in the world (that is no exaggeration), and they will be taking me to his hospital in Chicago for my surgeries. So don't worry too much about me ... I'm in excellent hands.