Okay, so now that we know that a port wine stain is, for lack of simpler words, a ‘proliferation’ of blood vessels along a nerve, I can tell you that recent research (which you’ll stumble across if you Google ‘port wine stain’) has determined that it is not hereditary.

The problem is simply a mutation that happens somewhere along the way as the fetus is developing. If it happens early (and therefore multiplies itself as the fetus grows), then you end up with a bigger, deeper, port wine stain. If it happens later in development, then you see a smaller, lighter port wine stain.

We’ve met people with varied port wine stains, from a little light-colored “Whatdidya spill there?” spot on a cheek, to Addy’s “Woah! What is On That Baby’s Face?” mask, to a half-bodied “Is that a purple tattoo?” job.

Again (and this is really important), these are not hemangiomas, they are not strawberries, and they will not go away on their own. But they are often all lumped together, since they are all ‘vascular malformations.’

Oddly enough (for a problem that’s not genetic), my third child Eloise was born with another “vascular malformation” – in this case, a hemangioma on her tushy. How do we know it’s a hemangioma, and not a port wine stain? Because that bright-pink little splotch is raised & bumpy; a port wine stain is dark and flat (to begin with). So, we can be reasonably assured that this pink little splotch, unlike a port wine stain, will eventually fade away as she grows.

In any case, I don’t care how long it takes that hemangioma to fade. It’s on your butt, sweetheart; I’m not paying to get that sucker to get lasered off.

I’m just one parent here, so all I can tell you about is my own experience: we took Baby Addy to a dermatologist who specializes in treating kids with port wine stains (Dr. Zelickson, you’re awesome) with pulse-dye laser treatment.

Basically, he hits Addy’s port wine stain with a yellow laser; because of the color spectrum, the red blood vessels absorb the yellow light, heat up, explode and die. When they die, they leave purple bruising behind, which clears up within a week. Overall effect: fewer blood vessels. And then we hit them again. And again.

In layman’s terms, it’s weed-whacking. The blood vessels grow as Addy grows, so we hope to weed-whack those suckers faster than they grow with her. That’s why we attacked them early (while they were young, easily-killable weeds), rather than waiting until she was older and the vessels were larger, tougher, and more numerous.

Results? Awesome. The stain is smaller and lighter. But because Addy’s happens to be more resistant (how appropriate for my stubborn eldest), we’re still weed-whacking after 30-some treatments, instead of the 12 to 20 they originally told us she might need. (It’s always hard to estimate, because each stain has different size & depth) But the progress so far has been fantastic. People mistake her stain, which previously lived up to its ‘port wine’ nomenclature, for a sunburn. Yessssss.

Each treatment requires Addy going under general anesthesia, since powerful lasers pointed at a squirmy child’s face would otherwise be cause for concern. I know some dermatologists just use local anesthetic or numbing cream (particularly for older kids or smaller stains), but as far as I can tell, Dr. Z. puts all of his kids under general anesthesia as a precaution.

In other news, I’ve heard that there might be some application for newly-improved cancer treatments to port wine stains: new cancer treatments cutting off blood supply to tumors (depriving them of their lifeblood) could potentially be applied to wreak equal havoc on the blood vessels of port wine stains. I shall stay tuned…

For those of you who wonder what exactly a port wine stain is (and either haven’t Googled it or are overwhelmed by the search results), it’s basically a wild proliferation of blood vessels – they never got the signal from their nerve to stop growing. 

Normally (and this is totally “Port Wine Stain 101” in layman’s terms, so double-check all this and any questions with a legit M.D.), the nerve sends a signal to its associated blood vessels to stop growing while the human is developing in utero.   Now, look at a human face from the side, and imagine three branches of the facial nerve running from the ear to the center of the face: one high (up along the forehead), one middle (straight to the nose), one low (along the jaw).  Each of these branches has blood vessels associated with it.  In Fetus Addy’s case, the middle branch of the facial nerve was the delinquent one:  somewhere along the way in utero, that nerve never gave the “okay, stop growing now” signal to its associated blood vessels, and they just kept growing.. .and growing… and growing, until they were a huge tangle (TONS of them) and huge themselves (with diameters MUCH bigger than a normal blood vessel). And, voila, a port wine stain.

These are not hemangiomas; these are not strawberries; they WILL NOT FADE with time.  In fact, as long as the body is growing… the blood vessels will keep growing, too.  So, in Newborn Addy’s case, we could expect that red port wine stain to turn purple.  And, eventually, thick and nodular as the blood vessels grew and tangled and grew some more.  Hence, our choice to zap it – and to start zapping it as soon as possible (before those blood vessels grew thicker and hardier).  For Addy, that was at 5 weeks old.

So this, hopefully, answers the basic “what is it?” question.  Soon, I’ll go into more detail about variations (because not all port wine stains are the same), recent research discoveries, and treatment (yay for pulse-dye lasers!).