Our Birthmark Story

I have answered a lot of questions about Caedmon's birthmark. Adults and children alike are curious about it. And I have come to realize that many people have never seen a Port Wine Stain, and honestly I don’t know that I had either before Caedmon was born.

In my attempt to educate, inform, and generally provide way too much information, I’ve compiled a list (‘cause ya’ll know I love lists) of posts detailing our journey to his diagnosis and treatment at Children’s.

But here’s a quick refresher course on the type of Birthmark Caedmon has (in plain English):

• A Port Wine Stain (PWS) is a venular anomaly/malformation. It occurs when the nerves surrounding the blood vessels aren’t there or don’t do their job properly and let the blood vessels get too big.
• If you have a PWS, you were born with it. They occur in .3% of births. Yes, point three percent. (See how special my boy is?) They occur equally in males and females. They do not go away on their own.
• The color can be anywhere from light pink to dark purple.
• It’s medically necessary to treat a PWS because of the possible complications it can cause. Since it is made up of blood vessels, it can grow (inward or outward), cobble (get bumpy), turn weird colors, and even bleed very easily. Most of those things don’t happen immediately, but left untreated, could begin to happen by the time the child reaches young adulthood.
• One of the treatments (the most common and probably most effective) for a PWS is with a Pulsed Dye Laser, the same kind of laser that is used for many skin issues. It can’t cure the PWS, but can effectively treat it by shrinking the size of the blood vessels temporarily. After maximum effectiveness is reached, maintenance treatments are required (sometimes annually) to keep the PWS in check.

Here are two of my favorite websites for PWS information.

So, if you want to start at the beginning of our story, here you go!

Superpowers

Meeting the Specialist (Laser Beam Doc)

You can see a photo journal of our progress here.

Click here if you’d like to read more about our journey. (The most recent will be at the top.)