15 week old Ruby with H on scalp - Vascular Birthmarks Foundation Forum
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  #1  
Old 11-18-2007, 11:44 AM
lpenman lpenman is offline
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Default 15 week old Ruby with H on scalp

Hi there everyone

My name is Laura and I'm from Edinburgh, Scotland and new to this website.

My daughter Ruby is 15 weeks old and has a large H on her head along with stork marks on the back of her neck.

The H appeared when she was about 3 weeks old and grew at an alarming rate for a few weeks. It seems to have stopped growing for now but I've noticed a tiny spot which has appeared just above her nose and eyes. I'm terrified it's another H but have read on some sites that if it was, it would have appeared within the first 5 weeks. Is this the case does anyone know?

We've visited a specialist at the Sick Kids Hospital in Edinburgh and they are not prepared to remove the H from her head but have advised it will hopefully disappear by the time she is 7. He told us that the skin will then be paper thin and hairless so she may need an operation to pull her scalp together and cover the hairless area.

I have to admit I have a difficult time dealing with peoples stares and I'm just so glad Ruby is none the wiser and not aware that she has the lump. I keep telling myself that it's just more of her to love. My partner and I make a joke of it when friends meet her for the first time as I feel if we didn't, it would be like there was a pink elephant in the room that we were all trying to ignore!


I've tried to post some pics but I'm not very computer literate and the file size is too big. I'd love to speak with people in a similar situation so please, please get in touch.

Laura and Ruby
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  #2  
Old 11-18-2007, 04:29 PM
missy missy is offline
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Hi Laura and welcome!

If you send the photo as an attachment to contact@birthmark.org, I'll resize it and post it for you.

Missy
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  #3  
Old 11-18-2007, 05:28 PM
lpenman lpenman is offline
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Hi Missy

Thanks very much, I'll send them on to you now.
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Old 11-18-2007, 08:05 PM
lo1 lo1 is offline
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Hi Laura

I'm Lorna and I live in Aberdeen so not too far from you. My 20 week daughter has a large H on her left eyelid and head that is affecting her vision. Like your daughter's her's appeared about 2 weeks after birth and grew very quickly. She has been on steroids now for over 2 months and there has been no change so we are not sure what's going to happen (but I get the feeling they want to wait.... which I'm not happy about).

I understand how you feel about people looking and it is really hard.

Hope you realise you are not alone and if you want to 'talk' we are here.

Lorna & Abbie xx
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  #5  
Old 11-18-2007, 08:30 PM
lpenman lpenman is offline
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Hi Lorna

Great to hear from you, thanks for the email. I'm sorry to hear about your wee one's H being on her eye. I can understand your frustration feeling that they want to wait to see what happens with Abbie's H, especially with it being on her eye and affecting her vision - you'd think they would deal with it asap. It is really hard isn't it? I'm just glad that they are babies and so have no idea themselves that they have them.

I was brave today and took off Ruby's hat when we were out for coffee. I always leave her hat on her when we're out but the last thing I want is for her to sense my discomfort at her H when she gets older so I need to sort myself out and stop concerning myself with what other people think.

I've sent a couple of pics of Ruby to Missy and she's going to resize and post them for me.

Please will you keep in touch and let me know if there is any improvement with the steroids?

Take care and thanks again for the email.

Laura & Ruby
xxx
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Old 11-18-2007, 09:42 PM
lo1 lo1 is offline
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Hi Laura

I am hoping to speak to one of her consultants tomorrow and we have the hospital again on Thursday so will let you know what they say.

Lorna xx
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  #7  
Old 11-19-2007, 11:29 AM
missy missy is offline
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Default Photos

Here are your photos!!

Missy
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File Type: jpg Liz-Photos-106.jpg (11.1 KB, 96 views)
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  #8  
Old 11-19-2007, 07:47 PM
lpenman lpenman is offline
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Thanks very much for that Missy!

Laura
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Old 11-19-2007, 08:05 PM
lo1 lo1 is offline
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Hi Laura

Ruby is so cute! Just thought I would let you know that Abbie's opthamologist is in London this week so we have cancelled our appointment on Thursday and will see him on the following Thursday.

Lorna x
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  #10  
Old 11-20-2007, 06:44 AM
rachael shields rachael shields is offline
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She is beautiful!
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