Part One.......The Birthmark
Benjamin came into our life on Valentines Day 2002 via scheduled C-section. The best Valentines Day our family has ever had. Because he had an in-utero heart condition, we were relieved to find that his heart was normal at birth. He did have a couple of red marks on his nose and lip, but I was not concerned as my other children had also had "stork bites" at birth which had disappeared with time. We brought him home 2 days later, and started our life with the new member of our family.

We noticed right away that the right side of Ben's face would turn bright red when he was hot, or crying. We brought it up to our family physician, and he said it was a common condition, and that it would continue to do this throughout is life. He even gave it a name, nevus flammeus. Ben's face continued to get darker and darker with age. His nose and lip "stork bites" did not fade, and the right side of his face now had a constant "blush". Finally at his 1 year old physical, his doctor told us he thought that Ben had a Port Wine Stain, and that we should see a dermatologist. He also stated that there is a rare syndrome called Sturge-Weber that can accompany this birthmark. We briefly discussed an MRI, but that we should consult the dermatologist about this. I left the appointment with a referral to a dermatologist, a referral to an opthamologist, an illness called Sturge Weber Syndrome that Ben may or may not have, and a

Ben's First Picture...he's about 5 minutes old.
birthmark called a port wine stain that I knew very little about. I realize that what I ultimately left the clinic with that day was more questions than answers. I was about to find out the hard way that the right questions are as hard to come by as the answers are.

I'm an information hound, so I went home that day and immediately got on the internet. Over the next few days I found that this was not just a birthmark, it was an entire health condition. Everything I read added one fear on top of the other, and no matter how many doctors I called, there seemed to be no one true answer to my questions. Could he have glaucoma? Could there be brain involvement? Will he have seizures? Is this why his nose bleeds all the time? Could his reflux be connected? There weren't any answers. At least not any specific answers.

Next - Finding the right doctors

Home
Ben's Story Page 2 - Finding the right doctors
Ben's Story Page 3 - Sturge Weber Syndrome
Ben's Story Page 4 - The AVF
Ben's Story Page 5 - Ben Goes To New York
Ben's Story Page 6 - Parkes Weber?
Ben's Birthmark Progression
Ben's Laser Treatments
What is Sturge Weber?
What is a Port Wine Stain?
What is an AVF?
What is an AVM?
What is Parkes Weber?
Links
E-mail
Our Family Blog