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  #1  
Old 01-02-2004, 03:39 PM
beccasmommy
 
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Default Honest input needed

Hi everyone,
I don't have a birthmark anymore, (I had a hemangioma on my hand as a child) but my little girl does. She is 2, has a large facial hemangioma. I was just wondering if any of you had a hard time in school because of your birthmark. Did people tease you/did you have poor self-esteem because of it. Any responses would be greatly appreciated. My baby is scheduled for surgery in Arkansas in March; I just wanted to know what we could expect if she did not have surgery.

Thanks alot!

Beccas Mommy ;D
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  #2  
Old 01-02-2004, 11:38 PM
eprmo eprmo is offline
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Join Date: Dec 2003
Posts: 133
Default Re:Honest input needed

Hi Becca's Mom,

My daughter is 14. She is a freshman in high school. She had a large nasal H. smack in the middle of her face. It looked just like a "Bert & Ernie" nose. We lived in a small town in Mass. so everyone knew her. They accpeted her. She told people she had a "boo-boo" on her nose. When she started elementary school, she knew the word HEMANGIOMA and explained to people it would go away".... HMMM, well that's what we were told!!!!She was never actually teased, but she was ALWAYS explaining!!! We moved to St. Louis when she was in 4th grade. Here she had a harder time.. Again, never teased to her face,,but talked about!!! She heard from others.....

If I had the opportunity to have her treated when she was young,,I WOULD HAVE!!!!!!

At age 12 we started laser treatments, and now, we are seeing Dr. Waner. She will have the surgery this summer.... I wish as her mother, the technology was around when she was young,, I do belive life would have been easier for her. BUT,,,,,in all honesty,,,,My daughter is one of the most sensitive and kindest kids I know...is it because of the hemangioma,,,who knows,,,,but,,, given the opportunities now,,I'd go for the surgery,,,

One thing my daughter does hate though is looking at baby pictures of herself!!!

Answering your question about self-esteem,,,,,,,, NO,,,she has been fine with that,,,I think as parents,,, we have always treated her as BEAUTIFUL,, and luckily, so have her freinds,,,,,, even now, she has a boyfreind and he sayd she's beautiful,,,,well, she is!!!!!

Elissa,,if I can help you in any other way, please feel free to e-mail me:
psyelectro@aol.com
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Elissa Rifkin
VBF Developmental Specialist
psyelectro@aol.com
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  #3  
Old 01-04-2004, 01:03 AM
gabisa30
 
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Default Re:Honest input needed

Hi Beccasmommy,
I am 30 years old with a pws which covers the entire left side of my face including my left eye,ear and my whole mouth down my neck and part way down my chest. I will honestly tell you it wasn't easy growing up. The constant pointing staring rude remarks to my mother about "abusing" me the list goes on. As a child, having such a huge birthmark was hard, I had alot of friends who didn't care at all about my face, and they always stuck up for me. The problem is that it hardened me as a child. I was very angry that I was "chosen" to be so different. My dad would tell me God made everyone unique for a reason. As I got older I started recieving laser treatments which were excruciatingly painful with very little result. I have had 6 treatments. They lightened a little but when I became pregnant with my daughter it became dark again. I wear makeup now and if you didn't know I had a birthmark you wouldn't see it. It is a blessing you child has been born recently when there is so much they can do for you. The very best of luck to you and your special baby. yours truly, Lori
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  #4  
Old 01-05-2004, 11:00 PM
beccasmommy
 
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Default Re:Honest input needed

Thanks for the advice. I have been having a hard time with this...she will be in the best care, but things happen.
She will most likely have the surgery, but i have wondering what it would be like for her if she didn't. I don't want her to be hardened...she's as sweet as they come, I want her to stay that way. If how i feel when i take her out is any indication, then the decision is made. I cannot tell you how much it hurts for someone to *gasp* at your new baby...

Thanks again.

Beccasmommy
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  #5  
Old 01-06-2004, 02:07 AM
eprmo eprmo is offline
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Join Date: Dec 2003
Posts: 133
Default Re:Honest input needed

Dear Becca's mommy,

I will give you the advice a friend gave me when my daughter was less then a year old, and we were walking in Nantucket, Mass. on vacation.
I, too, knew people stared at her, and looked with "pity".... and then I would give them an "evil" stare back... or I would whisper a nasty reply....
My girlfriend said to me you better realiize that
Jacqueline (my daughter) sees your responses and reactions to people,,,she sees how you repond to them looking at her,,,,, "don't respond in any other way that makes her feel anything less then BEAUTIFUL, WONDERFUL, and PROUD to be her MOMMY""

so from that day on,,I would always smile, and laugh and not react to anyones look......

I knew and still know my daughter is gorgeous,,,and to this day, she is sweet, and extremely sensitive and kind...Maybe I over-did teach her beauty comes from within...but, she knows she is beautiful, but, her nose needs some reconstructing...so, it's just a nose,,it's not her!!!!

I hope, you can understand, what I am trying to relay...
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  #6  
Old 01-06-2004, 03:57 AM
beccasmommy
 
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Default Re:Honest input needed

I understand. I am trying to work on that...she's becoming more aware of what's going on around her. I can't say I've had a really bad experience lately, but whether I say something or not, it still drives me crazy when people stare and whisper about her.

I try not to even look at people so I don't have to notice them looking at her. Makes it easier to focus on just Becca. It doesn't always help though, I caught a lady trying to get a second look in her rear view mirror while at a red light! Can't even get away in my own car....sigh.

Thanks for listening,
Jen
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  #7  
Old 03-07-2004, 01:20 AM
Lisa_99 Lisa_99 is offline
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Join Date: Mar 2004
Location: Madison MS
Posts: 48
Default Re:Honest input needed

Lori~

can you email me please.

thanks.

Lisa
Mississippi mom of PWS child
email: msearp9@jam.rr.com
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  #8  
Old 07-13-2004, 06:08 PM
rand
 
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Default Re:Honest input needed

There is a poll on the "Hemangioma Help" topic on EXACTLY this issue. A lot of good stuff for you there - take a look. Briefly, I'm 45 and grew up with facial hemangiomas. Get her the surgery.
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  #9  
Old 12-20-2004, 09:50 AM
Deliriou5?
 
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Default Re: Honest input needed

Hi. This is my first post. But it caught my eye. Even though now I am fine with my birthmark, it did effect how socialized with other people. I am 31 now, but growing up, I feel it prevented me from asking out girls when I got into my teen years. (I thought they would never go for a "freak" like me). They called me "Kool-Aid", "Period Face", and kids would accuse me of playing with Tampons. I would like to tell you that things would be dandy, but if you have the chance to seek treatment, I would jump on it. I am also sure that they would be more affordable now, then in the 80's when this kind of thing was new.
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  #10  
Old 01-17-2005, 01:05 PM
beccasmommy
 
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Default Re: Honest input needed

I cannot believe people called you Period Face! That is terrible. I truly believe Karma will bite them in the butt for that.

I'm happy to report that my daughter has had 2 surgeries and is about 90% hemangioma free. She may need one more surgery befor she starts school. Woohoo!

Jen, Becca's Mom
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