Saturday, September 6, 2008

Cassidy's Nevus

Well it's Saturday and even though I have LOTS to say and every intention of blogging much more often than once a WEEK, such is the working woman's dilemma: I HAVE NO STINKIN' TIME! This is the busiest time of year for me at work - the students moved back onto campus last week and classes started on Thursday. By the time I get home from work, I have no energy left and no desire to go back on the computer, I just want to eat dinner and put my feet up. Hopefully things will start to settle back down over the next couple of weeks.

So today I'd like to tell you my story about Cassidy's nevus. You may have never even heard of a nevus, which is why I like to tell this story. Because when Cassidy was born, I had never heard of a nevus, and I was scared to death.

When I was pregnant with Cassidy, we had an ultrasound and wanted to know if she was a boy or a girl. We had a little boy already and my sister also had a little boy - we were all hoping for the first baby girl in the family. I was absolutely thrilled when the technician said "Looks like it's a girl!" But her next words made me laugh, "She's got a lot of hair" is what she said. My sister, brother, husband, and I were all born completely bald. Trevor and Eric - born bald. So it was surprising to hear that this baby had a head-full of hair - but I wasn't too worried, I mean come on - it's just hair, right? *sigh* Keep reading.My due date was April 12. April 12 came and went. I should have known - Trevor didn't want to be born, either, and I was induced 2 weeks after his due date. Sure enough, Cassidy proved to be just as stubborn. On April 22 I was induced in the morning and was ready to give birth by around 2:30 that afternoon. My labors tend to be long and tortuous (I don't care what you've read about "forgetting the pain" - if you forgot, you're brain damaged), but my deliveries quick and easy - so quick, as a matter of fact, that the nurses did not believe me that I was ready to start pushing this baby out. Let's just say they believed me when they pulled the sheets back and took a peek. After about 20 minutes, they yelled at me to stop pushing - the umbilical cord was wrapped around her neck, just as it had been with Trevor. Talk about deja-vu - it was actually kind of weird how similar my two childbirth experiences were!This one proved to be different, though - when she was finally born, the nurses and midwife (I had midwives instead of doctors) got kind of quiet. I was so out of it, I barely noticed. Jeremy was with me and we were so thrilled to have our baby girl - I instantly said "Her name is Cassidy Rae" - she even LOOKED like a Cassidy. They said "She's 9 pounds, a big one! And she's 20 1/2 inches long." She was beautiful - all red in the face from screaming and this big shock of hair on her head. They wheeled me into a room to recover and kept Cassidy to do whatever it is that they do - then a doctor with a heavy accent came into my room and said "Don't worry, we'll schedule an appointment with a dermatologist and specialist, but we think she'll be fine - take her home and love her" - or something VERY similar to that. My heart almost stopped - EXCUSE ME? What the hell do you mean,you THINK she'll be fine??? What is wrong with her???? I thought I misunderstood his accent, or he must be in the wrong room - my baby is perfect! Of course she'll be fine, this is my baby girl!!!

When they brought Cassidy to me shortly after, we began inspecting her. That's when we realized that shock of dark hair on her head was not just hair. The skin underneath it was black - it looked like she was wearing one of those Jewish beanie-caps (yamulke?) on her head, it was almost perfectly round and only in that spot, towards the back of her scalp. But it was big - a good 4-5 inches round and covered in black hair, almost like a halo. The rest of her head was bald as can be. This is the best picture that I have that shows the nevus:

See how it's only on the top/back of her head? This is another good picture, I think she was about 3-4 months old in these:

So anyway - once we got her home, we made an appointment with her pediatrician, who immediately referred us to Dr. Seth Kates, the head of dermatology who turned out to be the best thing that could have happened to us. You see, this nevus is a "hairy congenital nevus", which means it would have hair growing out of it no matter what part of her body it was on. She was lucky that it was on her head, but we weren't sure if "normal" hair would grow, or if the nevus itself would get bigger, etc.

Dr. Kates took one look at Cassidy and I believe he fell in love. He was just starting his family, too, and he had young children at home. He knew I was terrified, all I did was cry. I had done research on this "nevus" and discovered that medical journals were filled with worst-case scenarios. Children who were born with this could develop these nevus cells on their spinal cord, a disease called "Neurocutaneous Melanosis" - NCM for short - and these children often died before they reached their 6th birthday - it is a fatal disease, no treatment and no cure. The first thing Dr. Kates told me was to stop reading medical journals. I took his advice.

I discovered a couple of support groups - Nevus Network was one of them, and they were very helpful and supportive. I had realized that an awful lot of parents worry most about the cosmetic impact of this birthmark and they opt to have the nevus removed. This is not as easy as it sounds - the child must have "tissue expanders" inserted into the "healthy skin" and filled with saline, so that the skin stretches up like a water balloon. Then, when they've got enough healthy skin, they cut out the nevus skin and stretch the healthy skin over it. It's not pretty, it causes scarring and if it's on the child's head, it's not a guarantee that their hair will grow in correctly, etc. If you go to the Nevus Network Photo Album page, you can see pictures of what the skin expanders look like and some of the finished results. WARNING - these pictures can be disturbing, please don't go look at them if you can't handle it.

Dr. Kates encouraged us to leave the nevus alone - his words were, "I will do whatever you choose, she is your child. But if she was my child, I would leave it alone and monitor it closely." Removing the nevus itself does not remove the risks that are associated with it - an increased risk of cancer, NCM, etc. If those nevus cells are scattered and in her brain/spinal cord, you cannot remove them. We trusted his expert opinion, and we've never been sorry. Cassidy had a couple of biopsies done on "suspicious spots" within the nevus - basically a mole within a mole - and all was clean. Dr. Kates convinced us not to have Cassidy tested for NCM - there is no cure, no treatment, and we knew that if she tested positive, we'd die of heartbreak. We decided to enjoy her instead and if the symptoms started to appear, we'd deal with it then. I will tell you, though, that those birthdays when she was 5, 6, 7 - they were milestones for us. We didn't talk about it, it would have been like jinxing ourselves. But I know I breathed a sigh of relief every year when we reached another birthday. By the time she turned 10, I finally started to relax and I actually started to forget about it - wait, "forget" is not the right word, because I could never forget. I guess I let it drift to that back part of your mind where you keep stuff that you can't bear to think about every day, but you know better than to forget - I put it all back there and let it rest.

There was one point when Cassidy was a pre-schooler and we had no health insurance. We were worried about a spot on her head, and we called Dr. Kates to ask his advice. He told us to come right in and not to worry about the insurance - he saw us free of charge and I will never forget that. We stay in contact, he sends us pictures of his family and I send him pictures of mine every year at Christmas. Cassidy has many birthmarks all over her body - they call them "satellite birthmarks" as if they are extensions of the nevus. She has them on her back, her arms, her legs, her stomach, etc. Last year she had a funny bump on her neck that I instantly called Dr. Kates about - it turned out to be a normal thing unrelated to the nevus, and he froze it off like you would do a wart. He was amazed at how big/old she has gotten - this is her now:
My baby is now 13 1/2 years old and has grown up so much. Her hair grew in thick and beautiful, with no indication of what lies beneath. It's got every color you can think of - her "normal" hair is light brown and blonde, the nevus hair is darker and coarser, but it all blends together and just looks like she has natural highlights. The nevus faded remarkably over the years, and you would never know it's there unless I told you. She's got the most adorable freckle-face you've ever seen (yeah, I'm a bit biased). I have volunteered my name and contact info to Nevus Network so they can give it out to any parents who need someone to talk to. Every now and then, I'll get an e-mail from a parent whose child was just born with a similar nevus - and their words are reminiscent of how I felt back when my baby was born and I was so scared and confused. I tell them my story, I tell them that it's a personal decision and no matter what, you HAVE to be willing to live with your decision. This is your baby and he/she can't make that decision - as shitty as it is, you have to take responsibility and then stand by it. If you choose to leave it alone, you cannot beat yourself up later if complications arise. By the same token, if you choose to remove it you cannot change your mind later - what's done is done. You did what you thought was best at the time, like so many other decisions we have to make as parents, and you can only move forward and make the best of each decision. Some parents have chastised me for not removing Cassidy's nevus, some have thanked me to the ends of the earth and back for sharing my story in time before they DID remove it - some doctors are aggressive and push the surgery - not all are as wonderful as Dr. Kates and willing to work WITH the family on what decision to make.

Dr. Kates has always been fascinated by the fact that Cassidy's nevus faded so much - I guess the majority of them do not. I happen to also have a cousin whose son has a hairy nevus on his thigh, and an aunt who has the same thing. We do know that genetics play a part in why some people are born with a nevus, and Cassidy is me 100%, so it's not surprising to think that my genetics had something to do with her nevus. A couple of months ago, I got an envelope in the mail from Dr. Kates. It was an article ripped out of a medical journal that discussed the spontaneous fading of congenital nevi. He had put a note on it "Interesting, huh? Hope all is well!" and I was flattered that he thought enough of me to share this article and also thrilled to see in writing, in a medical journal, what I knew all along - that Cassidy's nevus had faded.

So if you've read my previous blog entries, you know that I consider myself an odds-breaker. This is just one more example - nevi themselves are extremely rare, for one to fade and practically disappear is almost unheard of. So I guess my girl is an odds-breaker, too. All I care about is that she continues to grow up happy and healthy - so far, so good!

Have a great weekend! Peace!


  1. Even though I knew the story already, it was good to read it again. And you are right - she is beautiful - like her mom!! If she grows up to be half the person you are my friend, you will have done well!

    hugs, Linda

  2. I am a 39 year old grandmother who has a 5 1/2 year old granddaughter with a hairi nevus on her lover back (just above her butt).
    She is in kindergarden and is starting to get made fun of by some children (mostly boys) in her class.
    I asked my daughter to get a little info. on line about her birthmark and send home w/school mates so their parents could explain her birthmark, maybe some explaining would help? It breaks my heart to hear the stories from her & see the hurt in her eyes.
    I have explained to her she has a "special birthmark". She is always pulling her shirt down and gets upset if someone asks about it.
    I am not sure if my daughter will ever have it removed. I asked her to look into it since she was 1yr.
    thank you for posting Cassidy's story.