PLATTSBURGH — When Robby Knowles was born in January 1995, he was healthy and beautiful, and his parents took him home eager to begin parenting.
About two weeks later, Rick and Lisa Knowles noticed a purplish swelling on their son's lip. Their pediatrician suggested they shouldn't worry: it was just a mark from the pacifier.
"I don't know if they didn't recognize it, or what," said Rick, 35, a warranty administrator at McBride's Chevrolet. "It isn't too common, only 1 in 100."
As the growth enlarged, the Knowleses weren't comfortable with the first diagnosis and switched doctors.
"The second doctor identified it immediately as a hemangioma or vascular birthmark. He said it would have to be taken care of sometime," Rick said.
"As Robby grew so did the hemangioma. As he started to talk, we felt his words weren't coming out just right.
"Then there's the social stigma. Robby would try to play with other kids and they would shy away from him. We would take him grocery shopping and someone would say something like, 'Did he fall?'
"It bothered us a lot, but not him. He would not give up being friendly."
A few months passed. Rick's grandmother in Boston, Mass., was reading a newspaper one day and was amazed to find an article on hemangioma. She sent it to Rick's mother, opening the door for Rick and Lisa to get the information and help they needed.
"It was a pure miracle that my grandmother found that article," Rick said.
Through the article, they discovered the Hemangioma and Vascular Birthmarks Foundation in Latham. Its executive director is Linda Shannon, whose daughter had a hemangioma removed in Arkansas. She co-authored "Birthmarks: A Guide to Hemangiomas and Vascular Malformations" with the physician who performed the surgery on her daughter.
Shannon was a big help to the Knowleses.
"We had a lot of trouble getting our health insurance to approve the surgery because they said it was cosmetic surgery. Linda knew how to argue it wasn't and went to bat for us to get the approval. We couldn't have done it without her," Rick said.
Rick and Lisa took their 2-year-old son for consultation and evaluation with Dr. Edwin Williams III at Albany Medical Center. He had trained with the Arkansas physicians who pioneered laser surgery on these lesions.
In a March 1998 Albany Medical Center publication, Williams said that most hemangiomas don't go away. Some shrink, but many leave a deformity.
Williams also said studies show that children can be psychologically damaged from about age 3 if they have a deformity such as hemangiomas or other vascular birthmarks.
A few months after the family's initial visit with Dr. Williams, five-hour outpatient laser surgery was successfully performed on the golf-ball-sized growth on Robby's lip.
"It was wonderful to see him afterward," said Lisa. "There was only a small scar. After he was awake we took him back to the hotel with us, and he was just fine. We came home a day later."
The Knowleses have decided to help other parents who find themselves looking for help for a child with a hemangioma.
"Linda refers parents to us so we can help them through all the worry of dealing with the process," Rick said.
"It helps a lot when you can share the experience with someone who's been through it."