St. Luke's was recently honored for its efforts treating a potentially serious type of birth mark. Here's why
Since she was 8 weeks old, Ivy Shaw has received at least 17 laser treatments to remove a birthmark on her face.
It's not a cosmetic treatment; Ivy, of Upper Macungie Township, has a port wine capillary malformation, a relatively uncommon type of birthmark that thickens and darkens with age and is related to other health issues. Her parents, Daniel and Nicole Shaw, are betting that the treatments the 22-month-old receives regularly at St. Luke's University Health Network will protect her from complications later in life.
Recently, St. Luke’s became the 27th institution to be inducted into the Sturge-Weber Foundation Clinical Care Network. It’s one of three in Pennsylvania to be recognized for its clinical expertise in improving the quality of life and care of people with the syndrome.
What is Sturge-Weber syndrome?
When Ivy was born, her parents thought nothing of the blotchy reddish birthmark that covered her right cheek; they thought it was a bruise.
"Nicole had a very long labor and we thought and the doctors thought that it was just a result of that," Daniel Shaw said.
But when Ivy went to her first visit with the pediatrician, the Shaws were told the mark on her face was actually a capillary malformation, also known as a port wine stain.
Port wine birthmarks are caused by a specific type of genetic mutation that occurs after conception; about 1 in every 330 babies is born with one of these birthmarks. Perhaps the most famous person to have the condition was Mikhail Gorbachev, the last president of the Soviet Union, who had a prominent port wine mark on the top of his head.
Port wine birthmarks get their name from the resemblance to the color of Portuguese red wine. They can appear anywhere on the body. Unlike wine, however, port wine birthmarks do not get better with age. At birth, the marks are usually a light pink or red. Over time, the area of the skin affected by the mutation darkens and thickens, resulting in a leathery texture. Nodular growths are also possible and some of the growths are sensitive and bleed easily. But this is the least of the problems associated with the condition.
Rarely, when the condition occurs on the face and head, it can become Sturge-Weber syndrome, where the birthmark on the face is potentially related to abnormalities in the brain, developmental disabilities, issues with the body's hormone system, organ irregularities and glaucoma - high pressure in the eyes that can lead to permanent vision loss or blindness. A sizeable number of individuals with Sturge-Weber syndrome also suffer seizures. This condition affects at most 15% of those with port wine birthmarks on their faces.
Port wine birthmarks in other areas are related to other health problems. A birthmark on the skin covering the spine can be related to nervous system issues. A port wine birthmark on a limb may lead to that limb being larger or smaller than its counterpart. Port-wine birthmarks can also be related to vascular abnormalities.
Dr. Andrew Krakowski, chair of St. Luke's department of dermatology and the lead point of clinical contact for the Birthmark Center at St. Luke's, said in some cases, patients are never told by doctors that their port wine stain could come with side effects. He said he once helped the mother of another patient get diagnosed.
"I said, ‘Hey, I have to ask you, ma’am, when’s the last time you saw your eye doctor?' Because you could tell that her eye was swollen,” he said. “And she said, ‘I don’t know what you’re talking about.' And I said, ‘For your eye, hon. Have you ever seen an eye doctor?' She had never been plugged into any of the medical services around Sturge-Weber syndrome and she wound up in fact having Sturge-Weber syndrome."
Krakowski said port wine birthmarks and Sturge-Weber syndrome don’t always exclusively involve the skin or underlying capillaries, which can make treatment complicated, especially in older patients. This is why St. Luke's has put together a multidisciplinary team, which led to its induction into the Sturge-Weber Foundation's clinical care network. In Pennsylvania, the network also includes Jefferson Health in Philadelphia, and Wills Eye Hospital.
How the birthmarks are treated
Krakowski said people with capillary malformations should be evaluated for other health issues. However, treating the capillary malformations themselves is the best way of preventing any complications or other health problems, and the most proven method approved in the U.S. is pulsed dye laser therapy. In the procedure, lasers are applied for a short period of time, about two minutes per session, to zap and destroy the mutated capillaries without damaging the skin or causing scarring.
Krakowski said the lasers used to treat the condition only penetrate at most a millimeter deep into the skin. So treating children is the easiest and has the highest efficacy. And from a cognitive developmental standpoint, it's also likely best to treat children before they are 2 years old. He added that for children who have naturally darker skin, it is also easier to treat them when they are young, as their skin is less pigmented.
The fact that related health problems may occur later in life, but are not guaranteed or may occur at an uncertain time, can make it challenging for parents to decide whether to proceed with care for their child, Krakowski said.
"It’s a difficult conversation, right? You have to guess as to what your own child may be comfortable with. These treatments are not excruciatingly painful by any means, but you’re sort of being treated against your will," Krakowski said.
Krakowski added that not everyone who has a port wine birthmark wants or feels they need treatment, though, especially if they have no other serious conditions related to it.
"One of my best friends is now a very successful physician in the world of pediatric intensive care unit. He has a port wine birthmark over his right eye. He does not have glaucoma, he does not have seizures, so he does not have Sturge-Weber. He just has the birthmark," Krakowski said. "He's in one of the world’s premier academic medical institutions and he’s chosen to not have it treated.”
Daniel Shaw said he and his wife didn't make the decision lightly, but after talking to medical professionals, including his brother who is a pediatric anesthesiologist, and Krakowski, Shaw and his wife decided the risks of the procedure to Ivy were very low compared with the possible impact the capillary malformation could have.
"We wanted to start this as early and often as possible to mitigate the growth of the blood vessels because it is a mutation that will get more and more permanent over time," Daniel Shaw said.
He said that they do not know how many more treatments Ivy will need, but they have seen the results - the color and thickness of her mark have reduced significantly - and they trust the process.
He said there is some bruising afterward, but no lasting pain. As soon as the procedure is over, he said, his daughter is right back to her normal, cheery, outgoing and funny self.
Nicole Shaw said she and her husband are confident that getting treatment early was the right way to go. After about four weeks, the bruising completely vanishes and she has just a slightly rosy complexion.
"They’re so little and they won’t remember so much of this,” she said. “It’s harder as they get older because then there is that risk of having to put them under for anesthesia. Luckily, we haven’t needed to use that because she’s been doing them for so long and she is so good during the treatments. I would recommend doing it as young as possible."
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This story was originally published June 26, 2026 at 7:17 AM.