Facial birthmarks - Port Wine Stain

I don't really see this topic as specific special needs, however it was the better place to post the topic.
Our beautiful girl was born with a birthmark on her face. Covering a large portion of her left side of face. We are awaiting to see a pedaetrician for a diagnosis, however after a bit of research I believe she has a port-wine stain birthmark. I would love to hear from someone else who has one or a baby born with one. There is not a lot of information out there and I would be interested to get real life perspectives. I also believe (although as a mother would hope it not true) that this type of birthmark is permanent. Any information would be appreciated. It doesn't affect our love for her, however thinking ahead socially I am in wonder.

Thank you surfergirl. I know we will find out more as time goes on however its so nice to hear real stories.   I really appreciate you taking the time to write. Cheers

I've got one on my neck and have had laser treatment a couple of times which has made it heaps lighter. I also had a friend a school that had one on her cheek (I think from memory it was just her cheek) and she also had laser treatment and it went away.

Hi, I don't know much about port wine birthmarks. I have met two siblings who had them (one on front, one on back) but I don't know if they ever had them treated. Anyway, the coolest thing I ever heard about birthmarks was this story about a kid whose face was almost all birthmark: as he was growing up and asking questions, he was told "that's where an angel kissed you when you were a baby" and I think that's a really cool idea - different from the stigma that can sometimes come.

I have a pale brown birthmark (can't remember the type they are, think they are the most common) on my forehead and I remember feeling particularly self-conscious about it. Best thing is just to treat it is ordinary and don't make much fuss.

hi there im new to this site but i have a portwine stain birthmark on the right side of my face. it starts on my head over the cheek to my ear and right down my neck. i was born with this and have grown up with it getting worse at the age of 16 my mother took me to my doctor who looked into it. at 17 i had my first copper vapour laser treatment at st georges day surgery in christchurch by Dr peter walker over the next year i had surgry every 3 months. the results were amasing. now at the age of 22 it has retured but not to the full colour it was. i gave birth to a wee boy last year and he has one on the back of his head. i have alot of information on this and all my hospital paper work. in my experience over the years living with a bithmark i found it hard as a kid at school i got bullyed and teased i didnt have any convidence. if i can help anyone with this problem i will do what i can. my doctor that did my laser treatment told me the early you get it treated the better. if you want more info let me know.

Hey KitKat
So nice to hear :)
We are still waiting to hear from Super Clinic for an appointment.
In the meantime I've met up via email with a mum who has a 3yr daughter with a PWS. She is getting laser treatment. Hoping to catch up in the new year :)

Other than that nothing more re the birthmark getting looked at.

Have a great Xmas and I will update this topic once we visited (which will hopefully be soon).

xx

Latest update:
My daughter recently had an MRI and eye pressure test done. The MRI would allow us to see if she had Sturge-Webber syndrome. A week after her MRI we found that she was all clear. So a relief. Her eye pressure test was also cleared. We are yet to find out if she will need followup eye pressure tests as she gets older.
The next step is to start research on laser treatments. If anyone knows of a pedaetric dermatologist (bit of a mouthful) that they would recommend, that would be greatly appreciated. We really just want to learn more and see whether its best to act now while she is young.

Hey there,
I may be way too late with this reply. I have a port wine birthmark - i am 32 years old now, it didn't bother me when i was younger, but as soon as I hit college.. I was so cautious, my birthmark starts from my arm all the way up to my chest above my breast....luckily it doesn't cover my whole arm only half, so I can hide it providing my arm is facing down.. also with it being on my chest, I forever wear t-shirts but mainly jumpers so I cover my arm & my chest.... I am happily married right now... for almost 13 years, I had boyfriends before my husband, however none of them knew of my birthmark.. so I was very fortunate to let the man I knew I would spend the rest of my life with, about my birthmark, he said he noticed that there was something wrong, as I mainly used my left arm for eating, wearing jumpers on a hot as day, and not wearing any dresses or tops that would show any cleavage, as much as I wanted to, however I just couldn't. So I finally came out and told him, I wasn't expecting his reaction, he kissed me and said "this is part of you, this is what makes me different from the rest and unique"... now that was a real gentleman.. he loves my birthmark, however I don't. I am hoping to hear back from any doctor here in NZ if they can treat it.. I would rather they just treat my birthmark on my chest.. I really would love to wear nice dresses... my husband is very happy that I don't wear any dresses showing too much cleavage...he's very cheeky... but I would love to one day wear a dress that I don't have to go find a skivvy to put on under neath it...real hassle... for I have 2x children, my son first born has a port wine stain on his face, it's small, but I am want to get this treated, I don't want to go through what I've been through. I only use to get teased by a cousin of mine, to me she was jealous, the only way she could get at me, is talking 'bout my birthmark, and I hated it when she did. and i don't want my son to grow older and that birthmark gets bigger at the same time.
sorry to let you all in on my life story. But it feels great to get this out. I've told my husband I want laser treatment, he doesnt' want me to do it, but he understands that I'm the one living with this birthmark not him.

thank you.