Insenstive and hurtful comments about H? - Vascular Birthmarks Foundation Forum
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Old 02-17-2009, 05:05 PM
Tessamarie Tessamarie is offline
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Default Insenstive and hurtful comments about H?

I am not sure if this is the place to post this..but...this past weekend we took our DD out and yet again we went through the stares, pointing, whispering and comments. The insensitive comments we've received range from "augh, what's wrong with her head?" to "what did you do to her?" to "did you drop her on her head?" "did her brothers drop her?" and suggestions that we took deliberate actions to harm our much protected and loved daughter. I have tried to explain that it is a birthmark but the comments still flow and I have been close to tears many times. I have resorted to trying to put hats on her but it still doesn't completely cover up the bigger of her two Hs...and to make matters worse, her Hs are still growing! Is it not obvious that it is a birthmark? Has anyone else had to go through this every time they went out into public? How have you dealt with it?
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Old 02-17-2009, 05:52 PM
lo1 lo1 is offline
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Hi

Yes we still go through this and my daughter is now 19mths. In fact just today a little boy said "what has she done to her eye", "can she close it", "can she blink". I tried telling myself that he is just curious, but yet inside I was trying not to cry or be angry with him.

If it is a child that is curious I try to explain that it just a mark that will go away and that it doesnt hurt her, most of the time this stops anymore questions but some are just not satisfied with that.

If it is an adult I explain that it is an abnormal amount of blood vessels that grow in that area and that it will go away in time.

I so wish there was more public awareness through media, so we dont have to go through the extra stress of stares, pointing or questions. On a positive note, the more we can tell people about birthmarks the more people that know about them. In addition our children will grow up realising that everyone is different and that it doesnt matter what they look like its what is inside that counts.

Sorry I cant be of more help but just thought I would let you know your not alone!

Best wishes

Lo x
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Old 02-17-2009, 07:54 PM
jgoodman0814 jgoodman0814 is offline
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We went through a tough time just like you. our daughters h was on her right arm that extended all the way to her elbow and she was born in the summer, so sleevless shirts were all she could wear since short sleeves were too tight. i can remember how it made me feel, all the stares, and looks and comments. i tell you what worked the best. "its a benine tumor." i even went as far as to make cards to hand out that had a small saying on them about her hemangioma and asking them to visit this website if they wanted to learn more about it. i wouldnt wait for people to ask, if i saw them staring i would just tell them. my daughter is now 19 months old. she had her h removed at 11 months. you can see her site and photos below. i know its hard, keep you head up. even now i find myself when i see another child with an h, i talk to the parents to see if they know about this website, and to see if they are having troubles getting help. i tried to make it a positive and learning experience each and every time.
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Old 02-17-2009, 08:01 PM
Tessamarie Tessamarie is offline
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Jessica: Thank you so much for your link to your website...it helps seeing the after pictures too. Your daughter Ava is beautiful!
Lo: I agree, people need to be more informed. I don't think there is nearly enough awareness about H's and birthmarks. Even my own family doc doesn't seem understanding as far as how it affects the family. "Wait and see" and very little compassion is difficult on the parents! My own sister is a doctor and she tells me "to quit worrying and stop discussing it" so I have completely stopped saying anything to her or asking questions about it.
Thankfully, I discovered this website which has enabled me to see that there are many others going through the same thing.
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Old 02-18-2009, 01:22 PM
jgoodman0814 jgoodman0814 is offline
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This website is what led me to get more help for my daughter. Her pediatrician didnt referr us to a hemotologist until the h had ulcerated. then the hemotologist had a "wait and see" approach for about 4 months after that. finally i got tired of seeing my daughter in pain for 4 months straight. after the first ulceration healed and the second one showed up, and after talking to Dr Levitin on this website, i researched online to the nearest vascular specialist. That was when i found Dr Azizkhan at Childrens in Cin Oh. I couldnt take no for an answer anymore and he gave her laser treatment for the 2nd ulceration without question. 6 months later, we did removal. if you need any help or advice, please feel free to contact me. my personal email is on Ava's site as well as this one. Keep your head up. i know how hard it is. Oh and by the way, talk about as much as you want to. its your feelings and they are true. No one has the right to tell you not to talk about it if its not them going through it!
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Last edited by jgoodman0814 : 02-18-2009 at 01:25 PM.
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Old 02-18-2009, 03:53 PM
mamatomaysie mamatomaysie is offline
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We haven't received any ugly comments (that I've heard), but several children have stared or asked what it is. One offered us a tissue because she thought M's lip was bleeding. Most adults either don't say anything, or ask if it's a hemangioma. I assume they've had some experience with one since it's such a common birth mark. Then there was my mother in law who asked if it was a blood blister. My midwife acted kind of shocked to see it- I guess she hadn't experienced them before and was surprised since it wasn't there at birth. So no one's been ugly about it, but it's still hard to deal with sometimes. I usually just say it's a birthmark, and then they'll usually start talking about a birthmark or quirk that they or their children have.
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Old 02-18-2009, 07:07 PM
Sam's Mom Sam's Mom is offline
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I heard a lot of "What's wrong with his face?" I always wanted to reply "Nothing. What's wrong with your manners?" but let's face it - I'm Canadian, I don't have the guts! ;-)

However, I will admit that a couple of times, I said "It's a tumor!" with a really tragic look on my face and then watched people go white as a sheet. (Sam had a huge parotid hemangioma - it looked like he had half a grapefruit under the skin along his jawline - pretty noticable on a 6 month old.) That shut them up.

Interestingly, the hemangioma is still quite red on Sam's cheek, but now that it is flat, almost no one says anything. I don't know if they don't notice it (although with the colour, it still seems pretty noticable to me) or if it is just obvious that it's a birthmark now. I like to think it's because he's so charming and such a flirt, all they notice now is that.
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Old 02-18-2009, 09:38 PM
nickbar nickbar is offline
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Yes, we were there too. It was exhausting to go out to the stores. THe one thing that made it easier was joining this group...and especially the support group on msn (now at msnvb.org). I was among people that understood the ups and downs. Over time, I actually welcomed questions because I started to feel like this was my opportunity to educate and bring awareness... it takes time to feel comfortable with this role...and came much later when we saw things improving with the h.

I think the best advice I received and by talking with so many families over the years... make sure your child doesn't see it in your face...see how it makes you feel. Protecting her by not taking her out can also backfire and when she is older might feel insecure. Let her see how beautiful she is by the way you look at her. Handling the rude public? Well...there will be good days and bad. I will never forget the older gentleman that came up to me and told me about his granddaughter. She had a similar h. as my son's when she was younger and she is doing so well now and no problems left associated with the h. He said, he just wanted to confront me, because he knows it can be hard. It was a huge blessing to be in public and have a true caring person approach me for once. I saw the same man about a year later (he ran a local pumpkin patch) and explained to him how he helped me so much. Anyway... as hard as it is, try to remember the people that are ignorant or rude have the problem, not you. Sometimes you'll be so sick of it, a little "shame" can help you feel stronger. Give people the feeling like they were way out of line for acting so rude (look at them with wide eyes really obvious). It might not be the best way to handle it, but don't feel like you have to solve personality defects in others either. Sometimes people don't even realize how they come across...so a little shock can snap them out of the ignorant state. Education his huge... so sometimes if you don't want to talk to people about it, hand them a business like card with links to our site for more information. It often shuts people up or makes them realize how out of line they were.

Hang in there. I promise, it will get easier. Just keep living your life and try to enjoy your little one as much as possible.

C
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Old 02-20-2009, 12:22 AM
Tessamarie Tessamarie is offline
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Connie: thank you very much for your advice...I guess I haven't gotten yet to the part of being able to educate others (sometimes their comments are so quick and I am still stunned by them that I lose the opportunity to say anything!) Maybe at some point I will get more used to it too but for now, it is so hard. The other thing is, we have wanted a baby girl for a very long time and she is our miracle baby so we're thrilled to have her. But, it is so hard that we finally have our wonderful daughter but that no one seems to comment on how beautiful she is. Even other family members constantly ask us "what are you doing about her head?" before saying other nice things about her. Right now she is very young but I am worried now that as she gets older that she will have to face the same questions and I want her to be able to be matter of fact about it and not ashamed.
My own doctor told me (originally) that it would be almost gone by now, so we are also dealing with the realization that was far from the truth of what is really happening (it is continuing to grow at a fast rate). I wish we knew when there was an end to it but we don't..and we don't know either if there will be scaring or anything else left behind.
I am so thankful for this site and that I can see some good news stories of H's that have finally disappeared!
Sam's mom: I have thought of some of the same responses but never had the guts either to say it. I am Canadian too
Mamatomaysie: I am thinking I must be in a city with less educated individuals because rarely does anyone realize it is a birthmark or H
Thanks everyone for your comments...it is nice to know I am not alone!!
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Old 02-20-2009, 07:04 PM
iriecricket iriecricket is offline
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Red face

Tessamarie,
I feel like I could have written your last response! Our daughter is also a little miracle (five years of infertility with multiple miscarriages for me) and maybe, considering we had such a rough time having children, we're even more sensitive to other people's comments? I think my daughter is beautiful despite the hemangioma but like you, it would be nice to think that other people feel the same way too. I have been amazed by some of the things people have said to us about our daughter's hemangioma and she is only 3 1/2 months old. In the back of my mind, I keep thinking that this is just the beginning of the rude and inconsiderate comments and that we'll likely endure it for years to come. The worst was when two cashiers at a store stood there in a stunned, creepy silence staring at my daughter as I was purchasing some pants (and they should have been ringing up the sale). I was ready to cry. I think, for the first time in my life, I was speechless. For me, although our daughter's hemangioma is no where near as large as the ones I've seen on this site, I still want everything to be "right" for her. I'm sure that's true for all the parents on this site. I always try to educate and am thankful for those who ask questions rather than stare or make ill-informed comments.

On top of that, I feel a little deceived by our pediatrician and others that I've talked to who've told us how great the chances are that the hemangioma will just magically go away in a year or two.

We are scheduled to see Dr. Nelson at UCI on Tuesday. I've self-referred through the PPO side of my insurance and at this point, could care less how much more it will cost to see Dr. Nelson vs. had I begged my pediatrician to get us a referral to see him through the HMO.

Perhaps the best part is in knowing we're not alone and that others have been down the same road, many with excellent results. Hang in there and I'll keep you and your family in my prayers.
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