Facial birthmarks - Port Wine Stain
Printed From: OHbaby!
Category: Support
Forum Name: Parenting a child with special needs
Forum Description: A place for those parenting children with special needs to find support and share their thoughts
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=21585
Printed Date: 27 November 2024 at 11:16pm
Software Version: Web Wiz Forums 12.05 - http://www.webwizforums.com
Topic: Facial birthmarks - Port Wine Stain
Posted By: newmum01
Subject: Facial birthmarks - Port Wine Stain
Date Posted: 10 October 2008 at 11:22am
|
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. |
Replies:
Posted By: surfergirl
Date Posted: 10 October 2008 at 11:55am
|
I can't personally help, but, I am good family friends with a wee girl who has a facial port wine stain. Her b/m was very obvious when she was little, but as you say, you could still see she was a real wee beauty! As she grew the mark faded, but was still obvious. She was quite a shy wee girl, I don't know if this was due to the b/m or just her personality, but she did have plenty of friends. She is now in her teens and has been getting laser treatment on the b/m. It is quite hard to see now and as she grows older (and her mum lets her!) I can see that with a bit of make up noone will even notice it. I hope this sort of covers what you were after. Basically she's grown up a little shy but certainly not friendless or socially stunted. She is a LOVELY girl now. ------------- http://www.alterna-tickers.com"> 
|
Posted By: newmum01
Date Posted: 10 October 2008 at 5:09pm
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 
|
Posted By: Maya
Date Posted: 10 October 2008 at 7:36pm
|
I don't know much about them either but I used to work with a girl who had one, we were still at high school so she would have been about 15-ish I guess and she was having laser treatment on it, over the months that we worked together you could definitely notice it fading with the treatment. -------------  Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
|
Posted By: tiptoes
Date Posted: 20 October 2008 at 7:47pm
|
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. ------------- http://alterna-tickers.com">  
|
Posted By: KitKat
Date Posted: 10 November 2008 at 6:37pm
|
I was born with a stain like birthmark all down one side of my body, on my leg, and on areas of my face. It wasnt a Port BM but I am now 26 and you cant see it... it faded away. You can still see the edge of the one on my leg when I get a tan, one side tans more than the other- looks like a map. And on my side there is some mottled bruise like stain. But I never worried about it.
Just my experience anyways. B/M are a very common occurance- and some people even wish they had them. B/M= Beauty Mark  I think its unique.------------- 
http://www.littlegreenfruit.blogspot.com - Little Green Fruit |
Posted By: busymum
Date Posted: 10 November 2008 at 9:30pm
|
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. ------------- |
Posted By: TraceyA
Date Posted: 16 November 2008 at 11:10am
|
I knew two people with large facial PW BM's. One girl always had her attention drawn to it by her parents (more her mum really) and she was given make-up to wear when she was 12. She was always very self-conscious of it and wouldn't take her make-up off at night if she stayed at anyone's house and would be first up to make sure it was covered in the mornings. It was really sad. The other girl couldn't care less. Her parents never made any deal about it, she was very confident. She got teased a couple of times I was around her and she just bullied them back and when I asked her if the teasing bothered her she looked at me at asked why should she? It's not like their opinions mattered. Perhaps it was their personalities but I think it had more to do with the parents attitude. If you let it bother you, try to cover it up, talk about it in front of her with other people then it becomes an issue, something to be embarrassed about.
The first girl I mentioned, my mum said to her mum one day, Cary is such a pretty little thing and her mum turned around and said "yes she would be if not for, you know"  Her mum was very focused on appearance.
I have a stomach scar that I've had since birth, my parents never made a big deal about it, when I was about 14 mum told me that I was supposed to be scheduled in for an operation when I was 10 to have the scar turned into more of a belly button look, I said "why bother". My husband now refers to it as my "flower" (it looks like an upside down flower, sort of). And it's always given me the win in any "look at my scar" competition. No body ever pretended it wasn't there, but nobody bad a big deal out of it either. It was what it was and I can't imagine having a "real belly button" like everyone else (yuck, and how boring). I guess I'm just saying that it's ok for your daughter to be an individual, accept the birth mark as a normal part of her like her eyes, noes, hair etc and if when she's older she says to you "mum, can I can laser surgery to hide my scar" then talk to her about it, find out why she wants it, and make the decisions together so that she will never fear that you judge her as any less then perfect and she will know that you respect her decisions too. Ok that was a big 2 cents. ------------- TTC #2 |
Posted By: Tara_dylan
Date Posted: 27 November 2008 at 12:58pm
| 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. |
Posted By: KitKat
Date Posted: 16 December 2008 at 12:12pm
|
Hey- how are you getting on with the BM... have you seen the specialist?? I was thinking about you guys today :)
-------------
http://www.littlegreenfruit.blogspot.com - Little Green Fruit |
Posted By: newmum01
Date Posted: 16 December 2008 at 12:39pm
|
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 |
Posted By: newmum01
Date Posted: 22 January 2009 at 11:37am
| Here's out latest update. Tuesday this week we visited the Super Clinic, Kids Outpatient. It was confirmed that my daughter has a port wine stain on her face. With a bit of pushing on my behalf we will have organised an eye pressure test for the eye that has the birthmark near it. And an MRI to scan the brain and check that she will not have the Sturge-Webber syndrome. Each of these physical examinations will then allow us to look at what we are dealing with. If no issues then we will pursue further more info from specialists on treatments for the fading / removal of her mark. We can decide based on that info if its best to get the treatment now or allow her to make up her own mind when shes older. The process to learn more from 'professionals' has been a very DIY system. As a parent you have to push past what you hear. Make sure to do some research. If I had not asked for more from GP we would have gone along not really knowing anything. At the end of the day my daughter is healthy and happy and still a major joy in our lives. |
Posted By: newmum01
Date Posted: 02 March 2009 at 4:01pm
|
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. |
Posted By: clover
Date Posted: 11 March 2009 at 4:18pm
| I'm glad that there were no further complications. I can't help with any recommendations but hopefully you get put in touch with a great peadaetric dermatologist who can answer all your questions to decide what is best for your wee girl. |
Posted By: dejn8
Date Posted: 21 August 2009 at 11:59pm
|
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. |