Welcome!

We’d love your input!

I’m the mother of a gorgeous little girl who was born in 2008 with a port wine stain the middle-right side of her face. We’ve received questions and comments on the mark since she was born, which is perfectly fine with me and my husband, but as she grows older and more self conscious I want to make sure we equip her to handle the questions herself.

So please help us out! Have you (or your kid, sibling, parent, dog, anything) been the odd one out before? What questions did you get? How did you feel? What did you say in response? Please join the discussion! And as we encounter comments and questions, I’ll share our experiences here, too.

Quite simply, I’d like to have some small idea of what attitudes or questions a girl who has an obvious mark on her face might encounter as she grows older, and to ultimately teach her to respond to it all with humor and grace.

To join the conversation, simply comment on any of the posts here, and share your thoughts. (And just for fun, please tell me what state or country you’re from.) Thank you!

Posted on June 27, 2011, in 1. Home. Bookmark the permalink. 24 Comments.

  1. Your daughter is beautiful! I don’t have a port wine stain but I’m married to a woman who has one. It covers most of her right leg. She doesn’t seem to care and that is exactly why I love her and admire her. There are many more important things in life than a “perfect” skin, and she has taught me that. I hope you the best and make sure to tell your girl how Beautiful she is every day!

    • Thank you so much for your encouraging comments! Your wife’s port wine stain must be extensive, and I would imagine even uncomfortable at times (so much blood flow!). But such errors give us great perspective on beauty, don’t they?

      We tell Addy that she’s beautiful, and that her port wine stain itself is beautiful, too. (We love its sweeping shape.). We realized recently that we now may have to focus on encouraging her little sister Elly, who just turned 4 and sees her big sis as the ‘gold standard’ of beauty. :). Elly, it seems, is becoming aware that she lacks a ‘special’ port wine stain like Addy… Keith and I laughed when she told us she was pretty, but “not as pretty as Addy.”

      We didn’t see that coming, but consider ourselves lucky that we get to shape such a normal big sis / little sis perspective; it’s a great chance to help Elly understand the variety of beauty beyond, as you mentioned, “perfect ” skin.

      Thank you for coming!

  2. Hi! My friend forwarded this link to me and I am so impressed with your initiative to do what you can to help your beautiful daughter out. I’m 38 and I remember how uncomfortable it was growing up with port wine/birthmarks all over- both legs, full face, arm, eye etc. I was very lucky that I was blessed with a strong family and friends network. It makes a huge difference on your outlook on life and on yourself.

    As you probably do for Addy, other people around me always fielded questions about my birthmark when I was younger. I wasn’t deaf nor blind, so I heard all the comments and saw all the curious looks. I picked up a lot of my responses and attitude from how my “defenders” reacted. Of course,you’ll encounter the ones who had to give their opinions on how to “fix” the problem. Our attitude was that there wasn’t anything to fix. This is how God made me. Regardless of how my family and friends responded to the questions around me, I remember getting the physical reassurance from them with either a hug or hand/arm squeeze while they answered. It helped me not be afraid of questions, no matter how rude and reminded me that “yes, I AM different and that’s okay”.

    I did try Dermablend my senior year and I look back at those pictures, I don’t recognize myself. All my friends didn’t recognize me, either. Most of them didn’t even see or remember that I had birthmarks after the initial getting to know each other phase. I used to laugh when a new person would ask them what was on my face and they would answer more often than not “what’s wrong with it?”. They stopped seeing my birthmarks and started seeing me. And that’s how it was each new school year, and even now in adulthood. I would meet new people, they would either ask me or my friends, and we would answer and that would be the end of it. No sensational story about some crazy adventure or horrible accident I was in, just that this was how I was born and no, it doesn’t hurt.

    Of course you have to have humor. We used to joke around and say that I can never commit a crime, because I’m too noticeable. And you are. People always remember me, which probably gave my mom peace of mind. I rarely got into serious trouble. My favorite questions were from kids because of their innocent curiosity and unique perspective. Don’t be surprised when they start offering to show you their own birthmarks, no matter where they may be on their bodies. LOL. One was even jealous that I had so much more than him. And there’s the fun comments you receive. A guy once thought it was a butterfly tattoo, another kid thought it was purple freckles. Which just reminds you that people are going to see what they want to see. Remember your favorites to use in your repertoire of responses. Purple freckles is what I usual tell little kids.

    Try to not be surprised by some of the questions you receive. I’ve had several women approach me with numbers to domestic abuse hot-lines. Even when I insist that I was okay, they would think I was in “denial”. I’ve had people offer business cards to various dermatologist all over the world. I’ve had people think I’m contagious. Halloween was always interesting, too. People would compliment me on my Great make up when I wasn’t even wearing any.

    • By the way. Your daughter’s beautiful, happy smile and gorgeous blue eyes makes her stand out more than her cheeks coloration. May God bless you and your family.

      • August response

        Hello!  Thank you so much for coming here and commenting!!  I appreciate your kind words, and I apologize for the delay in responding here; we were traveling, and I’ve finally had a chance to breathe!  (And, shortly after I wrote that, I left my iPad at the hospital after one of Addy’s laser surgeries. This has not been my week!)

        WOW – from your description, it sounds like you have quite an intense port wine stain!  I can’t even imagine the awkward and uncomfortable moments you’ve encountered.  That’s awesome that you had a strong personal network; what a difference!

        Ha, yes – when Addy was a baby we fielded the questions for her; it was a challenge to change that habit and zip my mouth so she could learn to answer them.  You’re absolutely right that the kid picks up their responses & attitudes from the way their ‘defenders’ act.  If we grown-ups are graceful and comfortable, that’s what she learns to be; if we’re snarky and defensive, that’s what she learns.

        I love the fact that you remember getting physical reassurance at those moments; that’s brilliant!  I’m not naturally very touchy or physical, so I haven’t done that; I think Addy would respond very well if I did.  I’m going to try that next time.

        That’s funny that even your friends hardly noticed!! … Until they couldn’t recognize you with makeup! :))  And you’re absolutely right that new people are curious to know the story behind the mark; you have great wisdom to recognize that it’s a getting-to-know-you step, and it can pass uneventfully.  They’re not automatically negative or judgmental; they’re curious.  (And the fact that they’re curious to know if it hurts is, I think, I nice consideration.)

        Ah! Yes!  I completely agree – as long as Addy has her birth mark, she’s noticable and memorable, and that has given us GREAT peace of mind over the last seven years!  When she was born, there was a fire drill in the hospital, and all the alarms were going off.  My husband raced down to the nursery, where all the babies were lined up in the window, and all the pink- & blue-hatted heads looked alike… except for that little face under one pink hat that held a big, dark splotch!  Daddy picked her out in a split second, breathed a sigh of relief, and has loved the port wine stain ever since. 🙂

        Haha!  We’ve received stories from other people about their birthmarks or relatives’, but no one’s showed us theirs…yet!!

        Oh wow – that’s funny and sobering and kind of awesome that some women tried to do an intervention in your ‘domestic abuse’!  That would definitely be a hard one to deny… that’s exactly what they’d expect an abused woman to do!

        Thank you so much for all of your insight here; we absolutely appreciate the time you took to share so much of your experience and wisdom with us!  We’ll be keeping it for Addy; I have no doubt that, at least when she’s most bruised after surgery, she might be encountering some of the very same humorous reactions that you’ve gotten!  And I look forward to her seeing your sense of humor about it all. 

        Again, thank you and God bless!!

        p.s. – my blog’s email address is whathappenedtoherface@gmail.com.  If you ever want to share a picture of your stain, I would love to see it and show Addy!  

      • …Annnnnd, again, my comment has been very strangely formatted… Sorry if it’s hard to read!

  3. Jessica Davis

    Hi, my name is Jessica and I was born with a port wine stain that covers my right cheek, chin, and down the right side of my neck to about my collar bone. I am 17 years old and have had 19 laser surgeries to try to lighten and remove my mark. The last surgery I had was in 8th grade, and we stopped having them done because it honestly because too big of a hassle and it became difficult for me to miss school.

    Like Addy, my mark has lightened to that ‘strawberry jam’ color, and I have gotten used to it. It’s difficult meeting new people am having them stare at me and ask so many questions. Getting into middle school and my teen years was rather difficult for me, because I had crushes on boys and because of the way I looked, they never seemed to really like me back, which lowered my self esteem. She will find someone who loves her and thinks she is beautiful and would like to pursue her. Also, there were never really people who made fun of me or said anything mean to me in regards to my mark, but there are mean people in the world that canand will say things that your daughter may be sensitive about.

    I think that it is really important to teach her and to help her understand that she is beautiful and that she doesn’t need to get rid of her mark or cover it up and that she should be proud of who she is. When I was younger, because of the way I had been taught, I thought that having my mark was a bad thing and that I should cover it up and hide it from people, but as I’ve gotten older, I’ve learned that it makes me who I am and it makes me special.

    On another note, my stain did darken significantly as I got older and into puberty; I’m not sure why, as we were still having surgeries done then, but it did. Also, because of the way mine is shaped, the right side of my lips were always bigger than the left, making it look like I had always been punched in the mouth. One of my surgeons suggested that we try a different kind of laser on my lip and that it should make it smaller, and it did. So, if your daughter happens to have that problem, there are options out there to deal with that as well.

    If she gets older and decides that she wants to wear makeup to cover her mark, there is a brand of makeup called DermaBlend that is sold at Most Sehoras and at Dillard’s and at Macy’s and at Ulta I believe. It’s specially designed to cover up birthmarks and severe scarring and is absolutely wonderful. I use the cream cover up and it is wonderful and covers everything. I just use it over my problem area and put regular foundation over it and the rest of my face.

    Also, be wary of pimples or acne on her stain. If she gets a pimple and you pop it and it starts to bleed, it will bleed and bleed and bleed and bleed. You have to be extremely careful. Also, have her wear sunscreen on her face everyday. If her face sunburns it will hit exceedingly worse on her mark than on the rest of her face. It being sunburned often over time can also cause it to darken more.

    If you have any questions, please feel free to contact me. I know it can be difficult.

    • Jessica – thank you!!! Keith and I loved reading your insights here! You’ve confirmed a few things that have been lingering at the backs of our minds… We’ve heard from the doctor that, in spite of any progress we might make with the laser treatments, her port wine stain could resurge again in the teen years (and even again later, in pregnancy). Crazy! Thank you for the warning about bleeding – I’ve always been afraid that her port wine stain would get scratched on my watch, because I assumed it would bleed more, and I’m not great with blood. 🙂 It’s nice to know that I’m not totally paranoid!

      And the mouth! Yes! Addy’s lips aren’t exactly bigger on the right side (yet), but it’s totally starting to look like her mouth is more “full” on the right side; when she’s tired, she seems to “talk out of” her non-PWS side, and her smile pulls up more on the non-PWS side. Give it a few more years, and she may be asked about recent fistfights. 🙂 I’m happy to hear that there’s a more lip-friendly laser option we can explore later. Given the location of your port wine stain, does it show up in your mouth? Addy’s stain goes all the way to the back of her throat (even her tongue has a line down the middle), and I’m curious about your experience with it relative to your teeth and jaw. (Does it affect your flavor sensitivity or taste?)

      Thank you for the makeup tips — I’ve wondered what’s out there that would cover the stain well, in case she decides to try that route. I’m glad it’s easy to find at the major stores. I have no idea if she’ll decide she wants to cover it someday, but I’ll be prepared with the info ahead of time to take her to the store if the time comes.

      When Addy’s old enough to feel her first sting of being snubbed by a crush, I will be so thankful to share with her your insight, and console her that she’s not the first. Teen boys have never quite known what to do with out-of-the-ordinary (literally, extraordinary) women, and she will find comfort in your experiences before her. (I was usually snubbed for being a dork, and she probably won’t count that as legit.)

      Thank you again for sharing your wisdom!!

      • Ah, yes. Mine is in my mouth and on my throat and in my ears. My doctors always think I have ear infections or throat issues because of it.
        As far as having any issues with my mouth, I had a few issues when I had braces. Braces are really abrasive and they can cut your cheeks and lips, which would be really bad for someone with a port wine stain. Just be sure to keep her braces (if she has to have them) waxed really well and the orthodontist should be able to use smaller wires to keep them from cutting her.

      • Fantastic advice – thank you so much!! I hadn’t even thought that far ahead yet, but I remember my own bloody cheeks from braces, and can only imagine the havoc they’d wreak on Addy’s right cheek. Thank you!

  4. My 16month old daughter was born with a portwine stain on th left side of her face and I came across your blog during my research. I so appreciate your thoughtful insights. I worry how I will deal with the questions and stares as she gets older and more aware. She has had several laser treatments so far and we have seen a big improvement. I look forward to following your beautiful little girl’s journey.

    Felicia

    • I’m so glad you found us here! Come by anytime – I love finding other people with port wine stains and the like. 🙂 I’m glad to hear you’re doing laser treatments, too; isn’t the progress encouraging? Please drop by again – I’ll be chattering away about our experiences, tips we’ve found to deal with it, random info, etc. Thanks again for stopping by!

      • I look forward to reading all your updates! We have Sylvie’s next laser treatment on July 25. This will be her first under general anesthesia. The other 4 have been with the numbing cream and us holding her. The last one was in April and it was so difficult on all of us. She fought the restraint and screamed and cried, and it was just awful. A small area of the portwine stain is on the outer corner of her left eye, and to really laser it, she will need a contact lens put in, so we just opted to have no more treatments without anesthesia. I am so nervous about it, but I know we are doing the best thing for her long term. It helps to hear about your experiences. Thanks again.

      • Good timing, my post today is about treatment stuff. 🙂 You’ll be glad for the anesthesia – the kid just falls asleep and has no idea they’re being lasered. It’s much less action for them, although you should be prepared to cry. I tell everyone that now. (A friend of mine took her baby son in for a minor surgery to correct a small hernia or something, and she said nah, they’d be fine, it was such a minor procedure… and then, yep, the waterworks turned on.) 🙂 Every time. Of course, if you’ve already survived the torture of having to physically restrain your upset baby (WORST thing in the world), then this will be a welcome relief. The anesthesia makes the whole process so… boring.

        Your daughter might be a bit young, but ask the nurses if they can bring in an anesthesia mask ahead of time so Sylvie can see it. Then, have fun putting it on her face and even your face so she knows that the mask is a good thing. She’ll fight it less later. (Children’s Hospital gave us an extra one to take home so Addy could get used to it, have fun with it. I’ve had that thing plastered over my mouth MANY times as she’s played doctor with me.) Also ask if she can pick out a scent – some hospitals let kids put yummy-smelling stuff into the mask, and having some control over its application helps a kid’s anxiety. Addy always picks the pink bubble-gum lip balm, and likes to rub it on the mask herself.

        Let yourself have some fun with this; your daughter will absorb your attitude. If you’re relaxed, she’ll relax. If you introduce her to the mask ahead of time, she’ll see that it’s a good, familiar thing.

        One more thing: it often takes people (kids and adults alike) 3-5 days to shake the effects of anesthesia. You know how teething and growing makes kids act randomly weird? That’s what it’s like. So, for about a week afterward, expect a few occasions where she may act a little volatile (crying randomly) or tired. Usually, we see no effect, but I just wanted to give you a heads-up.

        We’ll say a quick prayer for Sylvie on the 25th and send happy, calm thoughts your way!

  5. just came across your blog…..read just a bit and I think your daughter is beautiful….stain and all! God Bless you in your journey.

  6. Your website is awesome. You should pass it on to doctors and pediatric clinics. More would benefit.
    Wendy

  7. Thank you for your comments! I’ve tried replying, but I’m not sure if I’m doing it correctly here… just in case my replies weren’t successful, I wanted to drop a post here to say thank you, thank you!! I love reading all of these insights… fantastic food for thought!

  8. Abigail Gelotte

    HI!

    A mutual friend (allison) sent me to your blog.
    I’m 32 and i have a vascular malformation (aka Hemangeoma) on my lip. Its not a port-wine stain, but in the same family.

    32 years ago, dr’s didn’t know as much as they do now, and my parents were encouraged to wait until I was 5 to do anything, because Hemangeioma’s sometimes go away on their own. Mine didn’t, and was very dark and huge by the time i was 5. I have had 4 surgeries on my lip, but it still continues to slowly grow. I get questioned frequently about it.

    I have found that i am much more likely to be questioned by a stranger than an acquaintance. It typically takes an acquaintance (at church for example) 3 visits to carefully ask about the mark on my lip. Strangers in the grocery store, or similar locations boldly ask “what happened to your lip’ or say something about ink or paint on my lip (especially when i worked in a paint store) — I look them straight in the face and say, oh yeah, my birthmark, I was born with it. They usually look ashamed and apologize.

    People want to hear the great “I fell while skiing” story.
    I could tell a story, but i’m not good at lying.

    Friends are much more sensitive, and i tell them more of my story and what it is, that it doesn’t hurt, etc.

    With kids, I say it’s a birth mark, something I was born with, and that it’s God’s special mark on me. (basically what I said to everyone as a kid)

    My advice: consider doing everything you can to get the stain removed or lightened. Talk to every interventional radiology specialist in your area. If you end up in Seattle, consider meeting with the world’s leading expert: Dr. Craig Murikami. There have been significant breakthroughs in lightening port wine stains lately, although I’m not completely sure about the details.

    Just recently, Interventional Radiology has made huge new advances and for the first time the technology is available for me to consider having my vascular malformation completely removed, something that has not been possible before.

    Good luck, your daughter is very beautiful, I’m sure whatever you decide she will be a happy sucessful lady!

    Please feel free to contact me if you want more information.

    ~ Abi

    Abigail Gelotte
    seattle, wa

  9. We have heard a “oh why do you ask?” can work very well!

  10. My daughter has a strawberry birth mark on her face. When she was just born the doctors told us what it was and said it would be gone in the next year. Not only were they wrong but it got darker. She has it on her right cheek,chin and a little on her neck. We always told her that it was a kiss from and angel. No one bothered her with it at all. We did receive many question’s. When she would go swimming or get cold it turn’s really dark and purple. Anyway she is 18 the 24th of this month. She is currently working but if you would like you can talk with her yourself. We actually asked her as she was growing up if she wanted it removed and she always said no. This past month we asked her again and she still said no until we explained Ins. reasons and that last chance to get it with out paying. Now she has said yes. It use to bother her when she would have her pictures taken and they would remove her birth mark because she felt that the person in the picture was not her. Anyway again she is a sweet girl and I know she wouldn’t mind talking to you if you would like.
    God bless you and your little girl

    • Carrie Evans fb me for contact when you put in my name you will see me pic. with out birthmark. Blonde hari blue eyes if that helps any?

      Sorry I guess I should give you some info. to contact her.:)

  11. Hi J and K,

    We’ve followed the birth and joys of your beautiful daughter since she was born – and there is NO doubt; she _IS_ beautiful!

    I think there will always be people who blurt out unkind things – ignorant and unthoughtful that they may be…. but anyone who comes to know your sweet daughter – should clearly see that she IS beautiful… inside AND outside!

    Her/ your situation reminds me of two young men (who shall remain nameless) that I went to High School and attended church with. The youngest fellow who was in my class, was a social nerd… he seemed to always think that I “liked” him… I didn’t… he was loud, obnoxious and just had no social graces what so ever! He had no exterior issues; he was a ordinary, normal looking guy… but – AGGGH! I’d avoid him like the plague.

    His elder brother, however, had a very large, very noticible port wine stain – much as Addies is. He was a sweet, KIND, cheerful, pleasant, FUN,and really, quite an attractive young man – being tall, well built and had a great smile – and I rather liked him… I certainly looked forward to seeing him in the hall!

    About his senior year – (perhaps my sophmore – I don’t know the details) but it seems that for some reason, it was removed….gosh! I barely “knew” him and could barely recognize him! After all the years that I saw him with the stain (although I’m sure his personality didn’t change) – I just had trouble recognizing him… the best way I can describe it – is that that stain… “WAS” part of his sweet personality… and I “missed” that part of him!

    Have courage that she will find her way, it _isn’t (or at least shouldn’t)_ a disability… it should never hold her back from being the wonderful person that she is! She has been “blessed” with a special kiss from God – gee, maybe God is a woman after all, and she was wearing too much lipstick! 🙂 I truly think that God perhaps gives EXTRA gifts to those whom might have extra challenges… my guess is that Addie may be one of those special folk!

    John’s comment, is that there is a lawyer in town – whom had a similar “stain” – and John had always heard it referred to as a “beauty mark” or “birthmark” … he didn’t know what I was talking about when I was called a “port wine stain”…

    Blessings to you all; and we enjoy seeing your posts about your family on Facebook!
    Love, John and Leslie

  12. She is so beautiful… And spunky… And smart, from everything I see on FB!

    This is a great idea for a blog! I’m going to share it.

    I don’t really have any specific advice and I imagine you’ve already checked out the resources that are out on the interwebs:
    1) birthmark.org… http://174.120.2.174/board
    2) ‘Port Journey’ blog… 
    http://enlerportwine.blogspot.com/2010/09/port-wine-stain-resources.html
    3) and a PWS Facebook page

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