Every baby evokes warm fuzzy feelings. The combination of big eyes, chubby cheeks, and smiley faces are a recipe for nurturing feelings in the people who surround them. But as every mom can tell you, having a baby opens the door for “well-meaning” people to comment on everything you do for the little one, from toys and clothes to how the baby naps and eats.
Aussie mom Brooke Atkins, 33, has been sharing her baby son Kingsley’s journey on TikTok. She explained to The Sun, that the baby has a port wine stain on half of his face. According to Mount Sinai, it's a birthmark composed of swollen blood vessels that shows up as a reddish-purplish discoloration of the skin. When it's on the face, it can indicate glaucoma and Sturge-Weber syndrome.
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It's more than a birthmark.
Kingsley has been diagnosed with both conditions. Sturge-Weber syndrome is a rare disorder that is present at birth. A key indicator of SWS is a facial port wine stain. The condition is characterized by seizures, headaches, paralysis/weakness, learning disabilities, glaucoma, and hypothyroidism.
Mount Sinai notes that treatments for SWS include anticonvulsant medicines for seizures, eye drops or surgery to treat glaucoma, laser therapy for port wine stains, physical therapy to address paralysis or weakness, and brain surgery to prevent seizures. Treatments are done on a case-by-case basis.
This is their new normal.
Brooke shared in a video that Kingsley has lesions on the left side of his brain, the same side as his birthmark. He has focal seizures that occur in his right hand and foot, which can be short or be longer than five minutes. After those seizures, he needs to be given emergency medicine.
She outlined a seizure he had recently, which lasted over an hour and required her to “give him breath.” Emergency services gave him oxygen, and brought him to the hospital where they were trying to get an IV in to better administer the emergency medicine. He seized for another hour before the medicine took effect. Brooke refers to this as “our normal now.”
Intervention is critical to maintain healthy skin.
For all her care and dedication as a mom of two, Brooke caught a lot of heat and was indeed referred to as a "monster" for seeking laser surgery to address Kingsley’s port wine stain. "The thing with port wine stains is that they are progressive, meaning they will change and darken over time,” Brooke said.
She explained to The Sun that the affected skin develops a cobblestone-like appearance with raised bumps, ridges, and dangerous bleeding. "Once a port wine stain gets to this stage, it is often very difficult to treat and laser barely has any affect, as the skin is already far too damaged."
Kingsley had pulse dye laser treatment at Queensland Children’s Hospital dermatology and vascular department. “The purpose of the laser treatments are not to 'remove' the birthmark but instead keep the skin healthy, to prevent any further damage to the area," she explained.
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Her supporters outweigh the detractors.
People weighed in on their decision with comments like: "That birthmark is barely visible, what you're doing to him is horrible, it's more for you than him," and “Don’t think I could laser my baby." Brookes "mum guilt" was off the charts. The comments made her cry.
“Thankfully for every negative comment, there were 100 positive, so it helped a lot!” she said. While she worries about his future, he keeps hitting his milestones, which is undoubtedly reassuring.
*Disclaimer: The advice on CafeMom.com is not a substitute for consultation with a medical professional or treatment for a specific condition. You should not use this information to diagnose or treat a health problem without consulting a qualified professional. Please contact your health-care provider with questions and concerns.
