Chase family fights for birthmark awareness

GUILDERLAND — Lianne and Kevin Chase were frightened as the birthmark on their young son’s hand swelled and bled. According to Lianne Chase, doctors misdiagnosed the boy’s affliction and told the family there wasn’t much they could do.

Then, she stumbled upon a web site for the Vascular Birth-marks Foundation. Chase and her son, Cody, met with the director of the foundation, who identified Cody’s hand as having a malformation. The six-year-old boy was treated and is now healthy.

Lianne Chase has made it her mission to help spread the word about the Vascular Birthmarks Foundation. She wrote a letter to The Enterprise editor this week, thanking the doctors who helped her son and publicizing Vascular Birthmark Awareness Day, which is this Sunday.

Cody’s story
Three or four months after Cody Chase was born, his parents noticed a bump on his hand.

"It looked like a spider bite," Lianne Chase said. But, she said, she didn’t worry; it’s common for birthmarks to appear on babies, a few months after they are born.

I didn’t think much of it, but you want your baby to be perfect, so I took him to the doctor," Chase said.

The doctor recommended a specialist who said the bump was probably a benign birthmark and there was no need to be alarmed. Most birthmarks are mere discolorations of the skin and are harmless.

But, Chase told The Enterprise, years passed and her songs birthmark got worse.

"In the summer, when it was really hot, it would get bigger and be plum or red colored," she said.

When Cody Chase was three years old, his mother took him to another doctor. The doctor diagnosed him as having a hemangioma, she said. A hemangioma is a type of birthmark that appears at or shortly after birth. It can be a raised or a flat mark on the skin that can ulcerate.

Hemangiomas can stop growing by the time a child is 18 months old; they can also be re-moved with steroids or lasers.

The Chase family visited a plastic surgeon, but dismissed that option when told what the operation would entail. Mean-while, Lianne Chase said, the doctors continued to tell her to wait for Cody’s birthmark to disappear.

In 2003, when he was five years old, Cody Chase started school. That November, he had a bad virus and his birthmark ballooned out on his hand.

"The doctors said that’s common," Lianne Chase said. "The birthmark acts almost like a strainer for viruses; that’s why it was so red."

Her son’s hand got even more swollen and red over the winter and reached its worst state in March. Chase made an appointment to see another doctor then.

The Friday before the appointment, she decided to do an Internet search for hemangioma. She found a web site for the Vascular Birthmarks Foundation.

The foundation, she said, saved her son.

The foundation

The Vascular Birthmarks Foundation was started 12 years ago by Linda Rozell-Shannon. Rozell-Shannon’s daughter had a birthmark similar to Cody’s on her lip. It was misdiagnosed as a hemangioma and later, when it was almost too late to treat, was found to be a malformation.

After her daughter’s treatments, Rozell-Shannon wrote a book with her doctor and established the foundation.

Chase read Rozell-Shannon’s story on the web site and then read her book, Birthmarks, A Guide to Hemangiomas and Vascular Malformations. Chase was surprised to find that the foundation is based in Niskayuna.

Chase and her son met with Rozell-Shannon and were told that Cody had the same story as her daughter.

"The doctor was calling it hemangioma, but he didn’t bother to look at birthmarks in a medical book," Chase said. "It wasn’t hemangioma; it’s a lymphatic malformation."

Rozell-Shannon diagnosed Cody Chase in one visit.

"She’s a layperson, but she’s the world’s leading layperson on birthmarks," Lianne Chase said of Rozell-Shannon. "She’s seen 4,000 birthmarks."

Malformations are often diagnosed as hemangioma, but are different. Malformations can appear at any age and swell with hormone changes or from trauma and sickness. They usually have to be removed with surgery.

Shannon informed Chase that her son’s birthmark wouldn’t get better without treatment. "She said it’ll get worse," Chase said. "He could even lose his hand."

Chase’s son then saw several specialists, whom she thanks in a letter to The Enterprise editor this week.

In January, at the Boston Children Hospital, Cody Chase had his birthmark surgically re-moved.

The surgeons were concerned about damaging arteries, veins, and tendons in his hand, but were able to remove the birth-mark successfully, his mother said.

"He was frightened, but extremely courageous," Chase said of her son. "It’s scary to put your child under, but it was comforting to know that we were at the best hospital and had the best man for the job."

She went on, "We prayed a lot and we put him in God’s hands and the surgeon’s hands....Birthmarks are benign tumors, so there’s always a chance they can grow back. But, he’s healing nicely."

Within two months, Cody Chase was playing baseball and climbing on monkey bars, his mother said.

"He has a scar because his skin was so damaged by sores," she said. "But, it looks great...It’s a miracle."

Awareness Day
"It amazed me that one in 10 children is born with a birth-mark," Chase said. "It amazed me that more doctors aren’t knowledgeable."

Chase was angry that none of her son’s doctors recommended she contact the foundation.

"That’s what the foundation is for; they are a wealth of help," she said.

The foundation holds free screening clinics in Albany. Had Chase known about this, she said, her son could have been diagnosed at a younger age.

"It’s a nice network of doctors," she said of those working with the foundation. "I used to work within walking distance of the foundation and I’d never heard of it."

Finding it on the web site, she said, "was a lucky fluke."

This Sunday, May 15, is the second annual Birthmark Awareness Day. It is also Lianne Chase’s birthday.

Last year, instead of accepting birthday presents, Chase had her friends and family donate money to the foundation. By telling her son’s story to The Enterprise, she’s hoping to raise more awareness about birthmarks.

Her other son, Casey, who is 7, has similar birthmarks on his neck and stomach. Her husband, Kevin, has one on the back of his leg.

Both were examined by Cody Chase’s doctors and given blood tests. It looks as if Casey Chase will have to have his birthmarks removed within the year, his mother said. His birthmarks get bigger and redder when he’s sick, she said.

"Casey’s saying, ‘When am I going to have mine done now"’" his mother said. "Both he and Cody are really good, courageous souls."

For more information, visit the foundations web site, www.birthmark.org.