Jun 29, 2003 04:01 AM
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(Updated Jun 29, 2003 04:03 AM)
Through writing this review, I intend to educate the public on a rare birthmark called a Giant Congenital'Hairy' Nevus. My hope is that you will come away from reading about this birthmark with a greater understanding of the illness and a renewed sense of empathy for people that appear physically different from you.
On June 18, 1999, my family’s life was forever changed when my first granddaughter was born. There was complete silence in the delivery room when Candace made her grand appearance into this world. As I excitedly watched the birth of my new grandbaby, I was struck by the immense pride I felt for my daughter. We were both anticipating a healthy, normal baby girl and couldn’t wait for the magical moment when she would come.
As I recall, that blessed day, I think of the stunned look on the obstetrician’s face and the shock on the delivery nurse’s face. We all looked at each other, not quite knowing what to say. My exhausted daughter, seventeen at the time, said to me, “Mommy, what’s on the baby’s face?”
The only words that I could manage were, “Um, honey, I don’t know, but I will find out.” Certainly, I thought that it was some sort of staining during the birthing process, but it was not. I was totally unprepared for this so after making sure that my daughter was okay, I ran out of the delivery room and cried in my husband’s arms.
After not sleeping that entire night, I called our family doctor the next morning. What I described to him was the oddest thing I had ever seen. My granddaughter had several large black spots on her back and on her bum that had thick black hair growing from them. Her face was 75% covered with this same disturbing skin. Some sections of her skin was raised and lumpy, others were smooth, but black! It was apparent to the family doctor that the baby had a nevus. I had never even heard of a Nevus so I researched it on the internet.
What I found out was so horrifying that I cried as I read about what my granddaughter’s future might be like. A Giant Congenital ‘Hairy’ Nevus is rare, affecting 1 out of every 20, 000 births. Nevus is Latin for mole. Congenital means having the condition since birth. The thick dark hair growing from the birthmark is a common part of this type of mole. Giant describes any birthmark that is one that covers a major portion of a major anatomical site. In my grandchild’s case, her face is the anatomical site with the Giant Nevus; the other smaller moles are called satellites of which there are literally hundreds all over her body!
There are many emotional and health issues that affect people born with a Nevus. People with Giant Nevi have an increased risk of developing skin cancer. The nevus cells that appear on the skin can also form in the central nervous system. When the nevus cells are in the brain or spinal cord, the condition is known as Neurocutaneous Melanosis, or NCM. NCM has very limited treatment and there is no known cure. This disease causes neurological problems, such as Hydrocephalus(water on the brain), developmental delays, and seizures. It is potentially fatal, often within the first few years of life, and can strike anyone with a nevus.
As you can imagine, emotional and psychological issues play a huge role in the way that people born with a GCN live their lives. When we brought Candace home from the hospital, we immediately realized what we were up against. First off, our precious baby was segregated from the rest of the babies in the nursery! She was handled as if she was contagious! GCN is not contagious…others cannot “catch it”! On the elevator, everyone wanted to see our new baby, but when they peered into her tiny blanket, the look of horror was quite evident on their no-longer-smiling faces! This was as difficult for the family as it would be for the child who has the GCN.
By the time Candace was 18 months old, she began to hide her face from strangers with her tiny hands. She was aware enough to know when people were gawking at her and pointing and whispering! Now, at age four, my courageous Candace has undergone five surgeries for removal of her facial nevus; that has the greatest potential for melanoma. She has been taught to tell strangers who stare'please don't stare at me! It's not nice!'
I write articles on Giant Congenital ‘Hairy’ Nevus and submit them all over the internet to spread this information on this rare birthmark and to encourage others to teach their children not to stare, point fingers, whisper about and gawk at people with obvious differences!
This has become my mission in life. Spread the word!
