In Search Of A Way To

Remove Port-Wine Birthmarks

By Kaaren Valenta

When John Priepke was born in 1978, his parents, Karla and Peter Priepke of Sandy Hook, were far more concerned about his other problems — seizures and glaucoma — to worry about the birthmark that covered almost half of his face. John Priepke was born with Sturge-Weber syndrome, a condition that is generally accompanied by a port-wine stain birthmark.

But port-wine stains, which range from pale pink to dark purple in color, can occur independent of medical conditions like Sturge-Weber. One in ten children are born each year with a vascular birthmark, and 40,000 of those cases require the opinion of a specialist. There is no single medical specialty dedicated to the diagnosis and treatment of vascular birthmarks, but a New York physician has made it his life’s work.

Dr Milton Waner, who has treated more than 4,000 patients with serious birthmarks and vascular abnormalities such as disfiguring hemangiomas, has joined with Dr Alejandro Berenstein, MD, an endovascular surgeon, to establish the Vascular and Birthmarks Institute of New York at Beth Israel Hospital.

Hannah Snow, a co-anchor on CBS television’s The Early Show, did a series of shows about birthmarks because she was born with a port-wine stain and endured years of laser treatments, drugs, and surgery. Among the guests she featured on the shows were Dr Waner and Lindsey Brown, 10, of New Milford. Both Dr Waner and Lindsey also came to Sandy Hook recently to attend a Sturge-Weber picnic at the Priepkes’ home on Riverside Road.

Lindsey, who does not have Sturge-Weber, began laser surgery treatments when she was just 9 months old for the removal of a large port-wine stain on the right side of her face. “I’ve had about nine treatments,” she said.

Lindsey’s mother, Kathy Brown, said repeated laser treatments are necessary because although the laser shrinks the dilated blood vessels that cause the birthmark, they eventually come back.

“We keep doing it because the blood vessels regenerate,” Mrs Brown said. “Doctors are now finding that it is best to treat as young as possible instead of waiting until the child is older.”

The Priepkes met Dr Waner at a port-wine stain conference at New York University a year ago, when he was still practicing at the Arkansas Children’s Hospital.

“He looked at John and said he could help,” Mrs Priepke said. “We waited until he came to New York, but if he hadn’t, we would have gone anywhere.”

John Priepke went to New York in May for a laser treatment and surgery to remove the growth of excess tissue in his cheek and lip, called hyperplacia, that was pushing his nose to the side. John was delighted with the results. “Now I can wear sunglasses again,” he said.

More than a cosmetic problem, the growth of tissue can cause problems in the nose and sinuses that making breathing difficult, and in the mouth on the gums that makes eating difficult and often embarrassing, Mrs Priepke said.

Years ago John had laser treatments with unsatisfactory results. But treatment for the removal of a port-wine stain has dramatically improved in recent years with the development of much more sophisticated technology.

“We are very happy with the results of Dr Waner’s work,” Mrs Priepke. “It has given John a new confidence in presenting his face to the public. He probably will have more surgery and laser treatments. We want people to know that there is someone who can help them.”

Dr Waner said no one really knows why the hyperplacia occurs.

“That is what I want to do research in,” he said. “I just recruited a dermatologist from Germany and am looking for funds to support the research. We’ve had a few clues. Everything in the body is a balance of hormones and signals. It seems like the signal for the soft tissue to stop growing isn’t there.”

So far what doctors are able to do is to treat the effect but not the cause, he said.

At this point, almost all port-wine stains will come back if the laser treatment stops, although some respond better than others, Dr Waner said. “I predicted a long time ago that they will come back and I was not popular with dermatologists.”

Dr Waner, 50, said it is vitally important for parents to get the correct diagnosis if their child is born with a port-wine stain, especially because the port-wine stain can be associated with eye problems, seizures, and seizure disorders. An ophthalmologist can rule out eye involvement, he said. And the earlier parents seek treatment, the better.

“When a child is young, the skin is very thin,” he said. “With thin skin, the laser can penetrate deeper and the treatment seems to be more effective.”

A South African by birth, Dr Waner started his career as a cancer surgeon but he was intrigued by the work of the late Dr Leon Goldman, considered by many to be the father of lasers in medicine, who was treating port-wine stains with lasers. At that time, the procedure left a scar. Dr Waner had a background in physics and began to think about the problem. He helped develop one of the lasers that could selectively destroy blood vessels.

“In this field, I could immediately make a difference,” he said. “This was completely uncharted territory.”

Dr Waner came to New York to collaborate with some of the world’s leading researchers and specialists, specialists in neurosurgery, radiology, and orthopedics, people he has described as doing “space-age” work.

He worked on creating a valid mathematical model for the use of lasers on humans. “I’ve just done it and just published it,” he said. “Now new lasers can be developed based on this model. Engineering is many years behind mathematics, however, so it will take a few years,” he said.

Laser equipment manufacturers have been focusing on cosmetic surgery, where the profits are immediate, he said, so funding will have to come through government grants and charitable organizations.

For more information on laser surgery and to locate qualified laser specialists, contact The American Society for Laser Medicine and Surgery by visiting aslms.org or the American Society for Dermatologic Society at aboutskinsurgery.org (or at 800-441-2737 during weekday business hours). For more information on birthmarks, visit www.birthmarks.org.

Dr Waner currently does surgery at two hospitals, St Luke’s Roosevelt Medical Center and Beth Israel. His office number is 212-987-0979 and email is mwarner@chpnet.org. To contact the Priepkes call 426-8811 or email pkjpriepke@aol.com.