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.
Sorry to disappear for a bit here, I’ve been on vacation!
It looks like I completely forgot to keep going after Treatment Tip #1 in the last post. Here are a few more tips (and again, some of these apply to any medical procedure):
– Mom (and/or Dad): Be prepared to cry. Putting your precious offspring in someone else’s hands for medical care will go against EVERY GRAIN OF PARENTAL INSTINCT in your soul. It’s okay. We’ve all been there. Choke up. It’s cool.
– Ask a nurse for an anesthesia mask so your kid can play with it ahead of time. Put it on your own face, too, so your child sees you at ease around it. (Children’s Hospital gave us an extra one for Addy to take home. I’ve had that thing plastered on my face MANY times as she played “doctor” with me.) Also ask them if your kid can put some yummy-smelling-stuff on the mask; Addy’s favorite flavor is “pink”, and they let her swipe the mask with some bubble-gum-flavored lip balm before going under. These actions give the kid more control and less anxiety over the whole process.
– If your kid goes under anesthesia for any reason, remember that it can take 3-5 days for a person (child or adult) to shake the effects of anesthesia. Basically, expect them to act emotional for up to a week. Weepy? Yep. Volatile? Yep. It’s like they’re teething or having a growth spurt, and it’s totally normal, even for grown-ups. Give them some grace, they’ll be back to normal soon. (Warn caregivers.)
– Also with anesthesia: it’s possible for their body to wake up before their brain. In other words, your kid looks awake, but their brain is still working off the anesthesia. I’ve seen Addy freak out when she woke up too early. (She was like the girl from the exorcist, totally weird, not my kid.) So now I ask them to MAKE SURE that she SLEEPS it off. I don’t care if it takes two extra hours; keep that kid asleep until her brain is de-fogged. Feel free to ask your anesthesiologist about it, or leave me a comment if you want to ask me for more info first.
– If your kid’s port wine stain reacts with eczema after a treatment, try Aquaphor. We’ve used Vaseline and bacitracin, and have settled on the awesome Aquaphor. It’s related to Vaseline, but is magically better. Don’t know why. Worth a shot. (And FABulous on your lips, mama. Feels soooo good!)
– Lip balm w/ sunscreen: When Addy was a squirmy baby, we used a sunscreened lip balm on her face to kill two birds with one stone: a single quick swipe provided 1) moisture (take that, eczema!) and 2) sunscreen (especially important for port wine stains). We used Shaklee’s Enfuselle SPF 15 lip balm, because we love it (so much so that we sell the stuff), and it doesn’t cause a reaction. Find whatever works for your kid’s skin. It saves you from having to apply sunscreen lotion with your fingers on your squirmy baby’s face, or worse, spraying one of those sunscreen sprays by her eyes. Very convenient while they’re small.
Even little things like laser treatments can cause parents stress. I hope these might help you if you’re bringing your little one into the hospital. And, as always, feel free to leave me any questions or comments here if you want further insights. 🙂
So, I decided to throw a few treatment tips on here, for those of you looking at treating your child for his or her port wine stain (or, really, anything).
#1: If you bring your kid in for a laser treatment, or ANY treatment, in ANY medical setting, remember this: YOUR CHILD’S CONFIDENCE WILL REFLECT YOURS, SO CHOOSE YOUR ATTITUDE WISELY.
Think of your kid as a lake; you’re the sky. If you’re sunny and bright, they’ll reflect sun & brightness, too. If you’re cloudy & moody, they’ll turn grey & moody, too.
We see this all the time with kids at Children’s Hospital. Kids come happy, ready to play with the toys in the surgery waiting area, and within 10 minutes they’ve absorbed their parents’ tension and worry. They know Something Bad is coming. Something Scary. They’d better sober up and look serious.
Meanwhile, the kids with relaxed parents are carefree, having fun playing with toys and chatting up the nurses. I’m lucky that my husband, who was a stay-at-home dad for Addy’s first two years, is naturally relaxed and very social. So whenever he took Addy in for surgery or shots or anything stressful, he talked her through the whole process (even when she was a baby), straightforwardly counted to three to warn her of each shot (since surprise shots are NEVER good), laughed with her when they were over, and chatted with the medical people so that she could see him being at ease with all these medical strangers.
Knowing that we had a lot of treatments ahead of us, we couldn’t afford for her to be anxious in the medical world. It made a difference; Addy loves going in for treatments, since each one is An Occasion: they’re fun, they’re social, and she gets to play with new toys. She loves doctors and nurses. She talks to patients and personnel. She knows that Everyone is There to Take Care of Her.
A few months ago we ran into her pediatrician, Dr. Steelman, (whom she has seen for each pre-op appointment for every laser surgery since she was 5 weeks old, along with all of her normal well-child visits since she was born) at a restaurant. Surprised and excited to bump into him, her eyes widened and the first words to tumble out of her mouth were: “UNCLE STEELMAN!” That’s how much affection she has for her doctor.
Your child’s watching you, ready to reflect whatever face you present. Have fun with this. Nurse offers you guys some stickers? AWESOME!! A popsicle? BEST DAY EVER!!
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!).
Addy receives laser treatments on her port wine stain at Children’s Hospital. She underwent her first treatment at 5 weeks old; now, she’s had about thirty. (I lost count somewhere in the mid-20s.)
I can go into more detail about these procedures later, in case other parents are interested; for now, I just want to use this post here to say thanks to Children’s hospital; even after 30-some trips there, we (especially Addy) still look forward to going in each time.
– At Addy’s last surgery, they removed a (very, very) loose tooth while she was under anesthesia, so that it wouldn’t suddenly fall out during the procedure and become an airway risk. So… the awesome Dr. Zelickson sent her back post-op with a pink box holding the tooth and some tooth-fairy money. (Including a $1,000,000 bill.) 🙂
– The staff in the surgery area know us so well that they helped come up with baby names for little Eloise when I was pregnant, they ask where her little brother is if I leave him with a babysitter, they bring Addy’s favorite toys before she even has to ask, and they remember that her favorite flavor for the anesthesia mask is pink bubblegum. I know they see a ton of patients, so the fact that they’ve gotten to know and remember Addy makes her mama feel good.
– This one may be obvious, but it’s worth pointing out: these folks know kids. They know them, they understand them, and they treat them as their own species, and not as small adults. Their physical needs and risks are completely different than adults’, and they carry the potential to develop a lifelong fear of medicine with a single bad experience. No pressure, right? And even after all her trips, Addy still loves doctors, nurses, techs, and anyone in scrubs.
– Through “Dream Night,” Children’s invited us, along with other kids (& their families) to spend an evening at the Minnesota zoo: free zoo pass, dinner, stuffed animal, access after closing time, and all sorts of fun, with other families from Children’s, Gillette’s and other hospitals. Needless to say, it was awesome.
So, thank you, Children’s Hospital (and all patrons, donors and supporters) for taking such good care of us. Even after 30-odd trips, Addy’s already asking me when we get to go in for another treatment.
In Wal-Mart today, we passed a little girl, maybe a year or two older than Addy. My little social butterfly gave her a smile and a small wave from our cart, and the little stranger returned the favor, studying Addy closely as we passed by. Before we had completely passed, the girl turned to her mom and said in a loud, excited stage whisper: “Mom!! Did you see her face?!”
I kept pushing the cart nonchalantly, watching Addy closely to see if she had heard. Seemed not to. Just to be safe, I casually said to her, “Addy, you really are a beautiful girl. I’m so glad to be seen with you.” (We compliment our kids a lot, so this wouldn’t be unusual.) She smiled: “Thanks.”
I wonder how she would have responded.
Funny – the port wine stain is so much lighter than it was when she was born, I’ve just assumed that no one really notices it. But over the last year, those blood vessels have grown along with her, making the port wine stain a bit darker (and wiping out some of the fabulous progress we’ve made with all those laser surgeries). So we’re getting more comments than we were, say, a year ago.
Speaking of surgeries, I’ll post soon about the awesome treatment we got at Children’s hospital last month. 🙂
(It’s been a while – sorry.)
Siblings. They’re as honest as every other kid out there.
Addy (who is now 5) just had a laser surgery, which makes her port wine stain darker and a bit blotchy with bruising. Clarence, her 3-year old brother, just noticed it – he pointed to the stain and said “That’s blood!” Addy corrected him nicely: “No, it’s not.” “Yes, it blood.” I interrupted: “No, buddy, Addy’s not bleeding.” “Yes, it blood.”
So Addy explained, “It’s my port wine stain from Dr. Zelickson.” (Close enough.)
Then she added (repeating what she had told me a few days earlier when we talked about going in for another treatment), smiling and touching her cheek delicately, “I pretend that this is a painting.”
When I dropped Addy off at preschool on Wednesday (the first day after her surgery), I lingered out of curiosity, vaguely chatting with other the other moms and the teacher while watching Addy out of the corner of my eye. Addy was happily getting settled, greeting the teacher and the other kids, getting into the playtime rhythm. I noticed that the little kids by us were watching her closely. A couple even started to follow her, to get a better look at her face while she was walking around. (Either she was oblivious, or she doesn’t mind an entourage.) One little boy finally stood right in front of her, stopping her, and stared hard for a minute – then he raised his hand, pointed to her face and asked “What’s that?”
Instinctively, her hand flew up… to the pink barrette in her hair, and she enthusiastically responded with “Oh, that to keep my hair out of the goop.” [Goop = post-laser ointment applied to cheek]
The boy just stared blankly. Addy tried again: “GOOP” – saying it clearly, as if the poor kid didn’t hear the first time). Another blank stare. “GOO-OOP!” Nothing. “GOO-OO-PUH!”
She finally gave up; clearly, he just wasn’t getting it, so she went off to play.
Okay, I chickened out.
I was going to talk to Addy about her stain, in order to preempt any comments from the other kids at preschool. (“Why is your face pink?” “What’s on your face?”) But, when I’ve seen her get questions in the past, she has generally just looked blankly at the interrogator and kept playing… so I figured I’d just see if we could keep that ‘blissfully ignorant’ stage going for a while longer.
As far as I can tell, she hasn’t received any comments or questions at preschool – yet. But she had a laser treatment on Monday, so the stain is looking mottled and dark purple. (When the laser kills blood vessels, they get temporarily darker, leaving the stain noticeably darker and bruised for a few days.) She’ll probably get questions today.
So, last night we decided to put it on her radar, and Keith had a “big-girl talk” with her at dinner. “Addy, you know how you had a laser surgery on Monday?” [she nods enthusiastically – she really likes her hospital visits] “Well, you know how your port wine stain is darker now? Like where it’s usually pink, and now it’s more purple?” [she nods blankly…like, what pink?]
So they go to the bathroom, where he holds her in front of the mirror. “See, Addy? You know how normally your port wine stain is a little bit pink? What color is it now?” She lights up like a Christmas tree: “PURPLE!!”
I had forgotten… purple is her second-favorite color. “And, and, and, my nose is PINK!” Pink is her absolute favorite color, ever.
“So you know the other kids at preschool? They – ” “They don’t have purple.” (She says it with sympathy. Poor kids.) “Well, they might ask you why you have purple. Do you know what you’ll say?” “It’s from my laser surgery with doctor Zelickson.”
Okay, so the kid’s picked up more than we’ve given her credit for. She knows and understands that the laser treatments lead to some bruising (about as much as a 3-year old can, I guess), and she knows that other kids don’t get the privilege of sporting pink noses or purple cheeks.
Can’t argue with that, I guess. We’ll see how it goes today; I’ll probably linger over the drop-off, just to watch the other kids’ first impressions, and to see if I can overhear any questions and watch her respond. Given her ‘big-girl talk’ with Daddy last night, I’m not too concerned… just really curious!