Toddler’s Port Wine Stains Inspire ‘Purple Polka Dot’ Procession, Pride

May 03, 2017 6:00 AM

An unpreventable birthmark, many port wine stains can be managed with laser treatment. How one family is doing so — and educating others in the process.

When Meghana Lee was born in March 2015, doctors performed a cesarean section because the baby was lodged on her mother’s hip.

MORE FROM MICHIGAN: Sign up for our weekly newsletter

They first thought the reddish spots on the baby’s cheek, chin and right ear were a result of the delivery — some bruising, perhaps, from her atypical position in the womb.

Still, “Hours went by, days went by, and it [the markings] never went away,” says Meghana’s mother, Jody, who with her husband, John, struggled to process a lack of answers from their care team. “I didn’t know who to ask. I didn’t know what to ask.”

A visit to a pediatric dermatologist several months later brought an instant conclusion: port wine stains.

Such vascular birthmarks, true to their name, look as if the maroon liquid was spilled on one’s skin. The condition affects about 1 in 3,000 live births, affecting males and females and all racial groups equally.

Although the markings are almost always present from birth — the unpreventable result of a genetic change or defect — there isn’t a specific test to confirm them.

“It’s primarily a clinical diagnosis,” says Jeffrey Orringer, M.D., a professor and service chief in the department of dermatology at the University of Michigan Medical School. “We look for a pattern of hypervascularity, or extra blood vessels, in the skin.”

Formally called a capillary vascular malformation, a port wine stain is characterized by a localized area of excess capillaries, Orringer says.

The area and scope of the stains varies by individual. In rare cases, port wine stains may be linked to a rare disorder known as Sturge-Weber syndrome. 

For most children, though, the stains are unrelated to other medical conditions. They are permanent, and tend to darken over time. An excessively rich blood supply can lead the affected tissue to thicken and, in turn, develop a cobblestone-like texture. Bleeding, infection and a decreased quality of life may follow. 

Though the stains will grow in proportion as a child ages, they won’t otherwise spread.

In addition, the impact of such a distinct birthmark on a child’s face can also complicate social adjustment during critical times in a child’s growth.

Reactive measures

Early action, especially within a child’s first year of life, is key to reducing the presence of a port wine stain, says Orringer.

Meghana, now 2 years old, visits the University of Michigan C.S. Mott Children’s Hospital about every six to eight weeks for therapeutic sessions with a device known as a pulsed-dye laser.

SEE ALSO: Thanks to Hit TV Show, One Boy’s Rare Disease Not So ‘Strange’

The goal: to help the body heal itself.

“The laser emits light of a wavelength that is preferentially absorbed by the color of blood,” says Orringer, who has seen and treated Meghana since she was 6 months old. “The heat that is transferred from the target [skin] to the wall of these excessive blood vessels causes the body to reabsorb the vessels.”

The regimen, Orringer notes, shows results in about 80 percent of patients.

The procedure lasts just a few minutes — with a person’s eyes covered with gauze for protection. Many children receive sedation to help them stay relaxed and ensure safety during the procedure, which requires the child remain still.

While the laser’s pulsations could be likened to feeling a repeated snapping of a rubber band on the skin, the visual aftereffects often far eclipse the temporary discomfort for patients.

Says Orringer: “They’re not in great pain, but they look like they’ve been through a brawl because they have bruises on their skin.”

Bruises disappear several days later. And Meghana’s parents say they’ve watched the port wine stains fade noticeably.

Her treatments likely will continue indefinitely, though the frequency will taper off over time.

Meghana Lee's face shows temporary bruising after her laser treatments but the "purple polka dots" disappear a few days later.

‘It’s just a part of who she is’

The Lees, residents of Orion Township, Michigan, don’t want their daughter’s appearance to define her.

But they want to educate more people about port wine stains.

Jody, after all, often bristles when having to explain to other adults that her daughter’s laser treatments are to ensure health and well-being — not vanity.

“People need to stop using the word ‘cosmetic,’” she says. “This is about her health.”

Which is why in August they staged the first annual Purple Polka Dot Race, a charitable 5K that raised $14,000 for the Vascular Birthmarks Foundation. 

“It was such a special day,” says Jody, who works as a physical therapist. “We just kind of looked at each other to say, ‘Hey, we’re normal.’”

The Lees know they will need to explain the particulars of port wine stains to their child as she grows older.

One way they already have approached the subject: a custom-made teddy bear named “B.B.” (short for “Birthmark Bear”) whose facial spots mirror those of his young owner. They’ve also read the children’s books “Sam’s Birthmark” and “Buddy Booby’s Birthmark” together.

Her parents connect with other families via Facebook for extra support.

They’re grateful for a child who is otherwise no different from her peers — a “sassy” and active toddler who enjoys swimming and spending time with her grandfather.

“She has such a big heart,” says Jody. “She loves everybody, everything.”

As for the birthmarks, “it’s just a part of who she is.”