{"id":229645,"date":"2026-06-27T13:34:16","date_gmt":"2026-06-27T13:34:16","guid":{"rendered":"https:\/\/www.newsbeep.com\/us-pa\/229645\/"},"modified":"2026-06-27T13:34:16","modified_gmt":"2026-06-27T13:34:16","slug":"st-lukes-joins-network-treating-port-wine-birthmarks","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us-pa\/229645\/","title":{"rendered":"St. Luke’s joins network treating port wine birthmarks"},"content":{"rendered":"

Since she was 8 weeks old, Ivy Shaw has received at least 17 laser treatments to remove a birthmark on her face.<\/p>\n

It\u2019s 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\u2019s University Health Network will protect her from complications later in life.<\/p>\n

Recently, St. Luke\u2019s became the 27th institution to be inducted into the Sturge-Weber Foundation Clinical Care Network. It\u2019s 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.<\/p>\n

What is Sturge-Weber syndrome?<\/p>\n

When Ivy was born, her parents thought nothing of the blotchy reddish birthmark that covered her right cheek; they thought it was a bruise.<\/p>\n

\u201cNicole had a very long labor and we thought and the doctors thought that it was just a result of that,\u201d Daniel Shaw said.<\/p>\n

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.<\/p>\n

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.<\/p>\n

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.<\/p>\n

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\u2019s hormone system, organ irregularities and glaucoma \u2014 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.<\/p>\n

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.<\/p>\n

\"Ivy<\/p>\n

Ivy Shaw smiles with her mother, Nicole Shaw, Thursday, June 18, 2026, at the family\u2019s home in Fogelsville. (Avery Folmar\/The Morning Call)\n<\/p>\n

\"Ivy<\/p>\n

Ivy Shaw, who was born with a Port Wine Birthmark, smiles Thursday, June 18, 2026, at her family\u2019s home in Fogelsville. She has been receiving laser treatments to remove the birthmark. (Avery Folmar\/The Morning Call)\n<\/p>\n

\"Ivy<\/p>\n

Ivy Shaw, who was born with a Port Wine Birthmark, smiles Thursday, June 18, 2026, at her family\u2019s home in Fogelsville. She has been receiving laser treatments to remove the birthmark. (Avery Folmar\/The Morning Call)\n<\/p>\n

\"Nicole<\/p>\n

Nicole and Daniel Shaw smile with their daughter, Ivy Shaw, Thursday, June 18, 2026, at the family\u2019s home in Fogelsville. Ivy Shaw was born with a Port Wine Birthmark and has been undergoing laser treatments to remove the birthmark. (Avery Folmar\/The Morning Call)\n<\/p>\n

\"Ivy<\/p>\n

Ivy Shaw smiles with her family dog, Pepper, Thursday, June 18, 2026, at the family\u2019s home in Fogelsville. (Avery Folmar\/The Morning Call)\n<\/p>\n

Show Caption<\/p>\n

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Ivy Shaw smiles with her mother, Nicole Shaw, Thursday, June 18, 2026, at the family\u2019s home in Fogelsville. (Avery Folmar\/The Morning Call)\n<\/p>\n

Expand<\/a><\/p>\n

Dr. Andrew Krakowski, chair of St. Luke\u2019s department of dermatology and the lead point of clinical contact for the Birthmark Center at St. Luke\u2019s, 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.<\/p>\n

\u201cI said, \u2018Hey, I have to ask you, ma\u2019am, when\u2019s the last time you saw your eye doctor?\u2019 Because you could tell that her eye was swollen,\u201d he said. \u201cAnd she said, \u2018I don\u2019t know what you\u2019re talking about.\u2019 And I said, \u2018For your eye, hon. Have you ever seen an eye doctor?\u2019 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.\u201d<\/p>\n

Krakowski said port wine birthmarks and Sturge-Weber syndrome don\u2019t always exclusively involve the skin or underlying capillaries, which can make treatment complicated, especially in older patients. This is why St. Luke\u2019s has put together a multidisciplinary team, which led to its induction into the Sturge-Weber Foundation\u2019s clinical care network. In Pennsylvania, the network also includes Jefferson Health in Philadelphia, and Wills Eye Hospital.<\/p>\n

How the birthmarks are treated<\/p>\n

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.<\/p>\n

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\u2019s 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.<\/p>\n

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.<\/p>\n

\u201cIt\u2019s 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\u2019re sort of being treated against your will,\u201d Krakowski said.<\/p>\n

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.<\/p>\n

\u201cOne 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,\u201d Krakowski said. \u201cHe\u2019s in one of the world\u2019s premier academic medical institutions and he\u2019s chosen to not have it treated.\u201d<\/p>\n

Daniel Shaw said he and his wife didn\u2019t 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.<\/p>\n

\u201cWe 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,\u201d Daniel Shaw said.<\/p>\n

He said that they do not know how many more treatments Ivy will need, but they have seen the results \u2014 the color and thickness of her mark have reduced significantly \u2014 and they trust the process.<\/p>\n

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.<\/p>\n

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.<\/p>\n

\u201cThey\u2019re so little and they won\u2019t remember so much of this,\u201d she said. \u201cIt\u2019s harder as they get older because then there is that risk of having to put them under for anesthesia. Luckily,\u00a0 we haven\u2019t needed to use that because she\u2019s been doing them for so long and she is so good during the treatments. I would recommend doing it as young as possible.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Since she was 8 weeks old, Ivy Shaw has received at least 17 laser treatments to remove a…\n","protected":false},"author":2,"featured_media":229646,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[119,121,120,1057,182,139,432],"class_list":["post-229645","post","type-post","status-publish","format-standard","has-post-thumbnail","category-allentown","tag-allentown","tag-allentown-headlines","tag-allentown-news","tag-health","tag-local-news","tag-news","tag-top-stories-tmc"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/posts\/229645","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/comments?post=229645"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/posts\/229645\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/media\/229646"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/media?parent=229645"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/categories?post=229645"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-pa\/wp-json\/wp\/v2\/tags?post=229645"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}