Mother Leads Crusade for Early Treatment of Strawberry Birthmarks

A red dot appeared on Christine Shannon’s lip when she was a week old. Her mother wasn’t worried--until it began to grow.

The doctor said it was a hemangioma, a benign, blood-filled tumor also known as a strawberry birthmark. He said it would go away. The standard treatment is to let nature take its course for several years.

Christine’s “birthmark” was as big as a golf ball by the time she was 8 months old. With the heavy tumor making her lip hang over her chin, Christine had trouble eating and learning to talk.

“Because nine out of 10 don’t need professional intervention, doctors say, ‘Let’s wait,’ ” says Linda Shannon, Christine’s mother. “That’s appalling to me. These kids don’t have to suffer. We have drugs and lasers that can correct this.”

Shannon and her husband, Chuck, sought a specialist. Surgeons in Boston and New York City told them Christine would have to wait several years and then have multiple surgeries. But Dr. Milton Waner of Little Rock, Ark., removed the entire lesion with a laser during one three-hour outpatient operation last September.

Now, 30-month-old Christine, a sociable girl with long dark hair, has only a pale pink scar as big as her fingertip beneath her mouth.

Her mother has become a crusader on behalf of other disfigured children across the country.

“It’s a mission I have,” says Shannon, a research analyst for the New York State Department of Motor Vehicles.

She hopes to persuade primary-care physicians to treat disfiguring birthmarks more aggressively, get insurance companies to cover surgery rather than label it cosmetic, and increase research into the disorder’s cause and cure.

Last fall, Shannon, 40, organized a regional clinic for vascular anomalies at Albany Medical Center Hospital. She’s the program coordinator.

Four hemangioma support groups across the country refer people to her as a source of information. She’s compiling a national database, asking parents to complete a detailed four-page survey.

She has developed a chart for pediatricians to use to differentiate hemangiomas from other lesions, and to determine appropriate treatment.

“Linda is an extraordinarily intelligent and active layperson who has become an expert in this disease,” says Dr. Martin Mihm, director of dermatology at Albany Medical Center and team leader of the specialists involved in the new Vascular Anomalies Clinic there.

Hemangiomas affect one in 100 babies, Mihm says, and 70% gradually disappear without treatment.

“The traditional teaching is that the best course of action is to wait and watch,” Mihm says. “However, we’ve found that with early intervention, we can prevent the growth spurt and disfigurement.”

Intervention may involve laser surgery or medical treatment with steroids or interferon.

At Albany Medical Center, a team of pathologists, dermatologists, plastic surgeons and radiologists evaluates each case and determines what, if any, treatment is warranted.

About 20 similar clinics have sprung up nationwide, says Mihm, who has been invited to establish a clinic in Milan, Italy, in October.

Russ and Maria Greenman of East Greenbush, near Albany, say their pediatrician told them just to keep an eye on a rosy triangular patch on their son Carl’s face when he was a month old. It soon started swelling.

A co-worker sent Greenman to Shannon for advice. She referred him to a doctor in Boston, who immediately started Carl on prednisone. The steroid made the tumor regress.

“It was closing his eye very rapidly,” Greenman said. “If we didn’t catch it when we did, he’d be blind now.’

Shara Sperry, 3, developed a spot on her forehead between her eyes when she was 10 days old, said her mother, Susan Sperry. It grew to a red lump the diameter of a quarter by the time she was 6 months old.

“We were shocked,” Sperry says. “But once we went through the initial ‘Oh no, not my child,’ it didn’t bother us. The only hard thing was when other people would say things.”

Dr. Edward Williams, an Albany plastic surgeon, removed Shara’s tumor in an outpatient procedure in May.

“There are two schools of thought,” Williams says. “The traditional one is to wait until the child is older. A few physicians around the country are trying to change that.”

Even if a tumor does fade away over the years, Edwards says, it can cause a lot of psychological distress in the meantime for both child and parents.

“I have a file of 75 children,” Shannon says, opening an album of photos sent to her by parents across the country. “Some mothers said they were forced to quit their jobs. Day-care centers wouldn’t take their kids because they’d scare the other children.

“A number of parents told me they were reported for child abuse,” she says, because the purplish swellings looked like bruises.

One photo shows a 6-month-old baby with a red, lumpy mass covering half her face. “The doctor said he’ll start surgical treatment at 15 months,” Shannon says. “He could have been doing aggressive pharmacological treatment, at least trying it.”

Another photo shows a girl with a “dog-flap” hemangioma, a mass causing her upper lip to hang in a blob covering her lower lip. “Doctors often say they can’t remove these lip lesions because there won’t be any lip left,” Shannon said. But a second photo shows the girl with a nearly normal lip after one surgery by Waner.

In another photo, a 15-month-old Australian boy has a hemangioma the size of a grapefruit behind his ear.

“The doctor had told his mother to leave it alone and it would go away,” Shannon says.

“Every day I get one of these pictures, and it just keeps me going.”

‘I have a file of 75 children. Some mothers said they were forced to quit their jobs. Day-care centers wouldn’t take their kids because they’d scare the other children. A number of parents told me they were reported for child abuse.’