Story Highlights• About one in 1,000 babies is born with a vascular birthmark
• Mom and son searched for a children's book on the topic, then wrote one
• Laser treatments common, but treat effect, not cause, doctor says
By Judy Fortin
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ATLANTA, Georgia (CNN) -- Donna Ducker started panicking within minutes of her son Evan's birth. "They said, 'There is something we need to tell you about your baby,'" she remembers.
"So many things raced through my mind, the last thing that I ever thought about was a birthmark." But that's exactly what doctors told her was wrong.
Evan was born with a port wine stain that stretches from below his right eye to his cheek. (Watch to learn more about birthmarks. )
"I thought, 'So what's the big deal?'" says Donna. "To my family it was no big deal and to my husband it was no big deal, but as soon as I brought him home I realized it was going to be a big deal."
Donna encountered myriad questions from strangers. "It wasn't, 'Congratulations. How's the baby doing?' It was this immediate knee-jerk reaction. 'What happened to his face? What's wrong with his face?'"
Heartbroken, Donna tended to stay inside with the newborn rather than face the scrutiny of others.
As he grew older, Donna decided to teach her son that a birthmark was not something to be ashamed of. In fact, she told him, it made him special.
It wasn't until Evan was 4, that she found a way to try to change perceptions about birthmarks. The pair went looking for a book about the subject at the local library, and when they were told there was nothing listed, they wrote their own.
Buddy Booby is born
"Buddy Booby's Birthmark" is the story of a bird born with a red birthmark on his beak. Now 12 years old, Evan often shares the book and his experiences with other schoolchildren.
"Isabella couldn't believe her eyes," reads Evan on a recent visit. "Her chick's beak was red instead of his feet, this came as quite a surprise."
Evan patiently answers questions afterwards from second-graders. "Does it hurt?" asks one girl. "No," says Evan. "They ask what's on my face, or is it poison ivy, or did you get hit, and I just tell them it's a birthmark." (Hear Evan Ducker read from "Buddy Booby's Birthmark." )
Vascular birthmarks like Evan's are not uncommon. It's estimated one in 1,000 are born with the abnormal marks on the skin. They are made up of tiny blood vessels.
Four times a year, Evan travels from his home in Kingston, New York, to Yale University in Connecticut for laser treatments to lighten the birthmark. His mother says the procedure is uncomfortable and creates a burning sensation in his face.
"The laser targets red. It targets the blood," explains pediatric facial plastic surgeon Milton Waner. "The laser will destroy the blood vessels by heating up the blood. The heat will then be transmitted to the wall of the blood vessel and this will be destroyed."
Waner is co-director of the Vascular and Birthmarks Institute of New York at Roosevelt Hospital. He says lasers are the most common and safest form of treatment.
A recent study published in the New England Journal of Medicine calls into question the success rate. Researchers at the University of Amsterdam found that laser treatments were only temporary. They looked at 51 patients with port wine stains. Ten years after laser treatment, 35 percent reported their stains turned dark again. 41 percent were not satisfied with their treatment.
Waner isn't surprised by the study. He published a similar report in 1996. "Only 10 to 15 percent of port wine stains will disappear completely with laser treatments," he says. "The laser treats the effect, not the cause.
He urges doctors to be very clear with patients. "Tell them the brutal truth: Not all port wine stains respond to treatments."
Advocating laser treatment
Despite the uncertain long-term results, Waner believes port wine stains should be treated with lasers because more of them are "progressive." As a child grows, so does the lesion. "We can improve quality of life even if it's temporary," he argues.
"Some port wine stains become incompatible with normal life. Some of them can bleed. ... Some of them can be extremely disfiguring." In Evan's case, his mother says, "Because his birthmark is located around his eye, he could have glaucoma, or if he gets cut, he could hemorrhage."
Like the Duckers, Waner is trying to dispel myths about birthmarks. "The first question a mother will ask is, 'What did I do? Is it my fault?'" he says. "The answer is no, absolutely not. There is no genetic element that we've been able to identify. In fact it is just a chance occurrence. Nobody is responsible for this."
He recommends parents teach their children coping skills at a young age. To help them, he's purchased several hundred copies of Evan's book to distribute to patients. "I think it's very important for a child to realize this is not a defect," he concludes. "There is nothing wrong with a child. Some people have them, some people don't."
Judy Fortin is a CNN Medical News correspondent.
Evan Ducker, 12, and his mom, Donna Ducker, often visit schools to read their book, "Buddy Booby's Birthmark."
HEALTH VIDEO LIBRARY
'BUDDY BOOBY' PROCEEDS
A portion of the proceeds from "Buddy Booby's Birthmark" goes to the Vascular Birthmarks Foundation. The organization raises money for research and educates the public about birthmarks.