Port wine stain Baby girl

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 My son and daughter in law have a beautiful baby girl now 3 weeks old and she has a port wine stain over both eyelids and her forehead , plus over parts of her nose. I am being so positive for them but know they are upset as I am.  I am unsure how or where to get advice as the Dr just says to leave it . How can he tell it is permanent ?

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9 Replies

  • Posted

    Congratulations to your son and daughter in law, and to you too!    

    I have posted a link to Great Ormond Street Hospital, which explains about this and what to expect.

    I hope you all have a lovely Christmas and well done for being so positive.

     

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    • Posted

      Thanks for your message and the link. It was good to read some more information on this. Happy Christmas to you and yours too.
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  • Posted

    There is info on this website and it seems treatment can begin when child is just a few weeks old.  I would be inclined to do research and then not take no for an answer from GP.  At the very least he/she should refer to a specialist.  All the best.  I am sure your granddaughter is gorgeous.  
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    • Posted

      Thanks for your reply - yes she is gorgeous  and  I am totally besotted as her Granny of course. I am definitely doing some research as you suggest. When she goes in for her 6 week check up they are going to discuss it more fully with Dr for sure !
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  • Posted

    Hi Tizzy66,

    I had this on my nose when i was a baby and it just dissapeard when i was about 1 yr.  Hope this may give you some comfort

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    • Posted

      Thanks - it really does help hearing about our people's experiences. We are hopeful that it will fade in time too. The Dr has had another look and says it may take quite a few years and only show up like it is now when she cries etc. We are used to it and don't notice it ourselves but you know how insensitive some people can be without meaning to be when they make a throw away comment. The main thing is she is a healthy and happy baby and fingers crossed it Will fade. Thanks again for your reply.
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  • Posted

    Hi! I don’t know if there’s a way to know if it is permanent other than to just wait and see. If her birthmark doesn’t fade however, here is my experience living with a small permanent birthmark on my face and treatments.

    21 years ago I was born with a 1/2 inch red port wine stain near my nose. They told my parents that it might or might not fade with age.

    As a child other children would ask me what it was - out of pure childlike curiosity - not to be mean, and then get used to it. It would go like this: «You, why do you have a red mark on your face?» «It’s a birthmark.» «What does that mean?» «I was born with it.» «Why?» «I don’t know, it’s almost like a mole.» «Okay.» And then we would continue/start playing. I was never teased about it.

    Of course I'd rather not have a bright red patch in the middle of my face, and in my late teens I asked my doctor about treatment. I had six pulsed dye laser treatments. Two of them with topical anaesthetic, the rest without, as it was more of a hassle than it was effective. For each zap (about 8 zaps per treatment for my birthmark) it would hurt really bad and make me jump, but the zapping was over within a minute or so. It would feel sore and sting for the rest of the day. Then followed two weeks of dark purple to grey bruising, and often painful scabbing after the laser burn.

    Although young, shy me didn't like having to explain my face to new people, maybe it has built some kind of character strength. I don’t blame my parents for not putting me through this cosmetic treatment as a child. (Though keep in mind that my birthmark didn’t change in texture as I grew older, as I’ve heard that if it thickens it will be more difficult to lighten.)

    When it comes to what results to expect from pulsed dye laser, I can confirm this statement from an info site: «you should see a significant improvement in its appearance, although it will not disappear completely». I’ve been told my birthmark can never be removed completely, but today it is much lighter, and I think the treatments were worth it after all.

    I have a pink mark on my face. After a while people get so used to seeing it that they don't really see it anymore. People that haven’t seen me before probably think I have a rash if they even notice. Oh, well. Occasionally I cover it up with makeup.

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    • Posted

      Thanks so much for taking the trouble to reply - such a help to read and I will show this to the parents as well. It is so good to read about people's own experiences - if anyone knows what it is like it is you ! Thanks.
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