When We Thought About Treating Baby Addy’s Port Wine Stain…
When a parent ponders whether or not to treat their child’s port wine stain (or any other malformation), they face a conundrum: they’re making a decision *for* their child that will have a HUGE impact on that kid’s emotional development, self-image, self-esteem, and school experience… annnd there’s a slim chance that their child will eventually hate them for it. (So, I guess it’s the same as most of our parenting decisions… Hm.)
A) If we treat this, then she won’t get made fun of as much in school – yay! But then again, maybe someday she’ll hate us for taking away a distinguishing mark that was rightfully hers…? B) If we leave it so that she alone can decide its fate when she’s older, then the damage will be done, both physical (as it may have grown too thick to treat completely) and emotional (as she will have already endured early childhood with immature classmates and the inevitable questions and teasings).
So there we are, with the fate of our daughter’s face in our hands. Obviously, we’ve decided to zap it off. (And we don’t regret it.) We’ll either get a sincere “Whew, thank you, Mom and Dad, for thoughtfully removing the mask so that people can see the true beauty of my face! I’m so glad I get to look like everyone else at prom!” …Or, we’ll get a dramatic “I CAN’T beliEVE you took away the ONE THING that made me unique! Now NO ONE will EVER notice me!” and then she’ll run upstairs and slam her bedroom door and blast whatever emo music the teenagers will be listening to at that point.
No pressure.
Posted on August 22, 2013, in 3. Addy Stories & Experiences and tagged Humor, Parenting, Treatments. Bookmark the permalink. 13 Comments.
Jennica
What Happened To Her Face? 
Thank you for your knowledge and experiences, and being a source of strength and wonder to your precious Addy. Children learn what they live, and your wonderful ways has made a huge difference in how incredible your Addy has become.
I am the mother of a 16 month old daughter with a PWS. I have been meaning to write this for over a year now, but never could find the right words to express my full gratitude.
When researching PWS, I was blown away by your blog, and how I have lived those same awkward moments too, and making decisions about the laser treatments etc.
We have began the laser treatments, at 8 months, and we were told they could have actually started earlier. It’s a 5 minute scream fest, but the cream freezes the area, and then the treatment is done. The doctor asked for the next treatment if we wanted her to have general anesthetic so they could get closer to her eye. However doctor told me the drug they used is propofol, and proceeded to tell me this was the drug Micheal Jackson died of! Seriously not a thing a mum of a 16month old wants to hear, and I was taken aback. I wanted to know how you coped with the general anaesthetic and the risks involved?
Thank you for your blog, it’s helped me a lot.
Hi Jen,
I am so glad that you are here! It brings me so much joy to hear that this blog has been meaningful to you. Having a baby is crazy hard enough, but having to navigate medical choices on top of that (not to mention raising a little girl with a big mark on her face) can be overwhelming! I’m glad that you’ve found some comfort here. Where are you located? We’re in the U.S. (Also, Addy wants to know what your daughter’s name is; she loves learning about other kiddos with Port Wine Stains!)
Addy has gone under anesthesia 42 times, and we’re not concerned about it at all. I know some people worry about anesthesia, but correct dosing is pretty straightforward for most people, especially healthy kids like our port wine stain kiddos. In fact, Addy’s specialist pretty much only treats PWS kids under anesthesia, because between powerful lasers and squirmy children, it’s much easier for everyone if they’re asleep. 😊
My son developed a tiny hemangioma on his face a couple years ago, and we got that lasered in the clinic without anesthesia (just numbing cream & sunglasses). It was our first time seeing & hearing the machine go ZAP! ZAPZAPZAP! ZAP! And that’s when we really understood the anesthesia; the zapping is so loud and invasive! Addy’s PWS is big enough that the treatments would be absolute misery without the anesthesia, and since we knew that she would require many treatments, we’re glad they’re not miserable. She loves going in for her laser surgeries!
Addy has, however, decided that she loves her port wine stain and wants to keep it, so we’ve slowed down treatments. We’re trying to keep as much of it as possible while still keeping its growth in check, especially around her eye, so it’s a bit of a balancing act. But we are thrilled that she wants to keep it!
We feel very comfortable with the anesthesia. All of Addy’s treatments are at a Children’s hospital, where the doctors are experts in small humans, and they understand the art & science of dosing. Addy’s doing brilliantly in school, and we’re not worried about any long-term effects, which is saying something after 42 laser surgeries.
Please feel free to email me any time! I’m at whathappenedtoherface@gmail.com, and am happy to answer any questions you have along your journey. (And I’d love to hear about how it’s going!
Take care,
Jennica
My dad has a port wine stain that covers the majority of his face, and since I’ve know him my whole life I never think about it. I think he looks beautiful, birth marks are nothing to be ashamed of.
I love that! It’s true – unique marks are nothing to be ashamed of. Teaching its bearer (Addy) to be confident in that truth is my goal. 🙂
New Mom here (less than a week), and my little girl has a PWB on her face. I was wondering if you had a tips on how to deal with insurance with the laser treatments?
Hello, and congratulations on your new baby girl!! (I would have responded sooner, but we were out on vacation, and I’m finally getting a chance to catch my breath.) (…Annnnd, shortly after I wrote that, I left my iPad at the hospital after Addy’s latest laser surgery last week… It has not been my week! But I’m back now, and fully functional.)
We’ve had a few different insurance carriers and plans over the last seven years and 37 treatments, so I definitely have some insight for insurance. 🙂
My first recommendation would be to find a specialist first who has treated a lot of port wine stain kids; their office will be experienced in dealing with insurance rules, and they can help give you guidance through the whole process.
The specialist’s office will give you a diagnosis code (what they’re treating) and a treatment code (how they’re treating it). You’ll want to give those codes to your insurance company first, to see if treatment is covered. In my experience, it usually is, as long as your doctor can prove ‘medical necessity’ – more on that below. Your insurance company can guide you to the next steps you once they know the codes.
Note: In some states, the law decrees that treatment of kids’ port wine stains must be covered. I don’t know the details on that, since I don’t live in one. But your specialist’s office will know if any such law applies in your state.
Once you have the codes and you call your insurance company to see if they cover this procedure, your insurance company will probably want a “letter of medical necessity”. This is a letter that your specialist will provide (which, again, is why you want a specialist who’s been there, done that – they’ll know what to say), detailing that this is a treatment that is medically necessary for the child, and not just cosmetic. (These laser treatments are also used for adults’ cosmetic “spiffing up”, which wouldn’t be covered by most plans, even in states that require covering PWS treatments. That’s what your insurance company will be watching for, and the letter of medical necessity will be what they need to move forward.)
Once the insurance company has your letter of medical necessity on file, you should be set. However, when we started treating Addy (at 5 weeks of age, then every month thereafter), the insurance company was often “behind the ball” – in other words, they hadn’t recorded the ‘letter of medical necessity’ by the time the first surgery was billed, so they rejected it; and I had to push back, pointing to the letter, which they then found & recorded and paid for the procedure, but not before another procedure had taken place, which they also promptly rejected. (A quick phone call reminding them that they covered this procedure, and that they had an accepted letter on file, straightened everything out.) After a few cycles, we were all on the same page, and biling was easier.
I recommed doing surgeries once every three months. Many years ago, when doctors were figuring out that lasers could treat port wine stains, they grabbed an arbitrary, “well, this would be good if done, say, every three months.” Over the years they realized that hitting the stain harder, earlier, with more frequent zappings was actually much more effective; but the original recommendations (which are used to determine insurance coverages) weren’t changed. As a result, many insurance companies won’t pay for laser treatments that occur within less than 90 days of each other. So, unless your specialist can fight that 90-day battle for you: don’t take chances. Keep them 90 days apart.
My final tip: always be kind and courteous. When yet another surgery was being rejected and I had to push back, calling them up and pointing out that they had paid for the last 8 surgeries, so they shouldn’t reject the ninth, I was always forced to begin with some poor kid on the 1-800 customer support line. If I was rude and demanding, they could shut me down: “Sorry, can’t help, it says here ‘not covered. Case closed, thank you, goodbye.'” But when I was polite, courteous and understanding, they helped me escalate my problem: “Wow, you’re right, we’ve totally covered the last 8, let me send this ninth one back for re-processing. Sorry about that, ma’am.” The person on the other end of the phone line is a human being, and remembering that will help you navigate at critical moments.
Please let me know if you have any other questions, concerns, or random thoughts! If you’d rather not share them here, my direct email address for my blog is whathappenedtoherface@gmail.com.
Thank you again for visiting!
…By the way, I’m afraid I have no idea why my note formatted so strangely. Sorry it’s hard to read!
Your daughter is beautiful. Thank you for sharing this – found you through a google search, researching for my own child.
How did it go with the laser treatment? My son who was born in December 2013 has a port wine stain on the right side of his face. Our specialist, however, doesn’t recommend (or won’t do) laser therapy until he’s older, like 7 or 8 when he won’t need full anesthesia.
Thank you so much for your comment! I’m so glad you found me! I love finding other parents in the same boat. 🙂
As far as treatments go, I would personally recommend starting as soon as possible. The blood vessels that make up port wine stains grow with the child, so over the next six years it will get thicker and darker, and harder to treat. If you can start the “weed whacking” early, when the blood vessels themselves are still younger & smaller, the overall treatment process is smoother; that is, he’ll probably need fewer treatments over a shorter span of time.
Some doctors want to avoid anesthesia, and recommend waiting until the kid is older. I don’t agree, because by the time they’re seven or eight they will have spent their whole early childhood (such formative years!) with a dark (and getting darker) mask on their face. Meanwhile, even a few early laser treatments, done while the PWS is still young, can at least reduce it to a pink mark (“Didja get a sunburn?”) instead of a red mask (“Whoa! What is that!!?”).
The benefit of avoiding anesthesia, for me, doesn’t outweigh the cost to the child’s first six years of emotional development, social interactions, growing self-awareness, and the identity they develop. (“I’m ‘that kid.'”).
We started Addy’s laser treatments when she was five weeks old, and we went monthly for over a year. We slowed down after that, but still continue to go regularly. She has had over 30 laser treatments before her seventh birthday, all under anesthesia.
(Keep in mind that Addy’s port wine stain is particularly stubborn! Most kids’ can disappear well before that.)
Your doctor may be reluctant to do anesthesia because they are aware of recent research in the last few years that has shown a connection between repeated trips under anesthesia and increased ADD in children (and perhaps some other complications as well, I can’t remember). However, that research didn’t take into account the fact that children who go under anesthesia repeatedly often have other conditions, much more complex than a port wine stain, that are likely to impair cognitive and emotional development. All the PWS kids we’ve met who got it treated early are perfectly high-functioning kids, and Addy’s doing fabulously in school, so it doesn’t worry me.
We loved seeing early progress with Addy! Hers was really dark, and the lightening of it was encouraging.
Take all my advice with a grain of salt and follow your gut as his mom. :). If you decide to treat it, I can give you more insight about the treatment process specifically. If you decide not to treat, then I’d be thrilled to share some of our wisdom earned of social situations, and can give some tips to make them go smoothly. (As you can tell, I love talking about Addy!) 🙂
Thank you again for visiting!
Hello! My son turned 1 month today and he has a PWS on I/4 of his face: half his forehead down to his eyelid. They won’t start lasers until May because he needs anesthesia to shield his eyeball. I’d like to start asap, but that’s what they recommend. We still have to see the neurologist, but the other drs have given good reports so far. So hopefully we are just dealing w it as a cosmetic issue. And I think it looks worse in any photos I take! Ugh. Thank you for sharing your experience. We are using the drs at lurie children’s in Chicago.
I’m glad you’re here! Thank you so much for your comment. That first month is a bit overwhelming, isn’t it? Port wine stains can come with a variety of issues, so on top of welcoming a baby who looks so different from what we expect, we have to suddenly worry about their eyes and brain, too! I’m so very glad to hear that your other doctors have given good reports! Our schedule was kind of the reverse when Addy was born – we started the laser treatments shortly after her one-month birthday, but didn’t get the MRI or the eye appointment until he was about 5 months old. (I think that at the time I didn’t fully understand the spectrum of PWS complications, like Sturge-Weber syndrome, so I was blissfully unaware. 🙂 Her brain turned out to be fine, and so far she’s not yet showing signs of glaucoma, though we’ll have to continue watching for that for many years. If you’re at a children’s hospital, I bet your son is being well taken care of. We love going to a hospital just for kids because they know how to take care of the little bittles: rather than treating them like tiny adults, they treat them like their own species! Addy LOVES going to her laser surgeries at Children’s here; she looks forward to it for weeks. I’d love to hear more about your son, and pray for a good report from the neurologist for him and peace of mind for his mom. 😉
Thank you so much for all of the information! I called my son’s specialist at Sick Kids in Toronto and spoke to the nurse who is in charge of the laser lab there. They’re going to set up an appt to talk in person and get him on the list to have the treatment. He’s already had an MRI to scan for any abnormalities with his brain (thank God there’s nothing), ditto with the ophthalmologist – so hopefully that will alleviate any concerns with anesthesia.
Again, I am so glad I found your blog – it’s great to connect with another mom in the same situation, and your explanations are so clear. I had been feeling uneasy about waiting until DS is in school to do the laser treatment and you’ve laid out very helpful information that will help me in my discussions with his doctor. I just haven’t known what questions to ask and was thrown by the whole situation to be honest. What parent ever prepares for this before the birth of their child? I know in the grand scheme, this is not the worse thing to happen. Far from it. But like you said, it can have an impact on their self-esteem and that has far-reaching consequences. (I’m not trying to raise any alarms with that – I’m just sensitive to realities my DS will have to face – pardon the pun.)
The way the dr explained it, laser treatment didn’t seem to be an option until DS was older. Reading that the PWS gets worse with time is alarming. He’s 14 months and already people ask about his face. Right now the PWS is fairly light, so most of the time it looks like a rash or a sunburn.
Can you share some more about the treatment process, and any advice you have on how to handle the questions and help him in social situations is much appreciated.
I’m so glad to hear his MRI was clear! That’s a weight off your shoulders. When Addy’s MRI was done at about 5 mo old, we got the ‘all clear!’ report on my husband’s birthday, so that was a very fun birthday present. 🙂
You go, Mom! Way to be proactive! I was so overwhelmed with baby Addy (she was my first kid) and so ignorant of port wine stains that I really had no idea what to do or where to go; my mom (an MD) was often the one that helped guide and prod me along. I probably would have waited much longer to do anything, even Google it, if left to my own devices. 🙂
One more thought just occurred to me about treatments: because the laser treatments are done under anesthesia (which is awesome, ’cause I really don’t want them pointing a high-powered laser at my fidgety girl’s face without her being asleep first), each outpatient surgery will probably require a pre-op appointment the prior week. (That’s the physical exam they do to make sure the kid can go under anesthesia; it’s usually routine for any surgery.) Then the surgery itself will bruise the port wine stain and turn it a darker purple, which lasts for 3-7 days. My point: once your kid’s in school, this all becomes a lot more complicated. Gotta miss some school for the pre-op appointment, then gotta miss some school for the surgery morning, then gotta prep your kid for the “WHOAH! Are you okay?” questions that inevitably come from having a sudden & drastic change in appearance… As a mom of multiple small children, I can tell you that everything is a million times simpler when you can cart them around anywhere you want without having to schedule a school week on top of it all. With medical stuff, it’s especially true! So, food for thought. 🙂