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-   -   SHAI’S STORY: Living with Multiple Hemangioma (http://birthmark.org/board/showthread.php?t=2807)

ShaiPearce1990 03-04-2008 02:03 PM

SHAI’S STORY: Living with Multiple Hemangioma
 
Hi Im new here, my name is Shai (pronounced S-h-a-y) I don’t really know where to start this.. But here goes. I was born in October 1990 and I seemed like a normal baby. However, when I was six weeks old my parents started to notice little red marks on the right side of my face and on the top right side of my back. They appeared like little tiny scratches at first, but they soon began to get bigger. My parents took me to the Doctor and he told my mum that they would disappear, but he still referred me to a paediatrician at the hospital.

The marks soon swelled and I was diagnosed with Multiple Hemangioma. It wasn’t able to be treated until it had grown to full size. I had a large one on the right side of my face, from my eye to just below my ear. One on my nose, lip, left ear, a huge one on my back which was about the size of a football and also one in my knee that stopped me from walking for a few months.

One night when my Dad was feeding me he noticed that I was taking an extra hitched breath when breathing. I was taken to hospital again and they discovered that I had one growing in my wind pipe, that was beginning to block it and making breathing hard. The Doctor’s said that this one could not be left, because eventually it would block completely and I would probably stop breathing, so they gave me steroids to shrink it. This worked, however I was then very prone to infections because it had weakened my immune system.

After it had finished involuting, I was left with very saggy skin on my face. My back was still quite large, but it had shrunk enough for me to have surgery. So at 2 ½ I had my first major operation to remove the Hemangioma from my back. The operation was originally only meant to last a few hours, however it ended up lasting 10! And I nearly had to have a blood transfusion. My mum says she remembers telling my Dad that she thought I was going to die and that it was an awful time. However I made it through and I was left with a scar stretching along the top of my back. The next operation I had was on my face. For this, they had to cut my ear off, and pull the excess skin back behind where my ear would be, and then put my ear back on. So I’m left with a scar behind my ear. The Hemangioma was too large to get rid of completely, so I still have a scar on my face. I also have a little bit of a fat lip, but its hardly noticeable. My other ear that had it on had to be completely reshaped because the Hemangioma had ruined it really, so my left ear is different to my right. The one on my nose was completely removed with no scarring. The one in my knee shrunk and went on its own. In all I had about four operations, the last one I had was in year 3 at school. After this my surgeon said that they would have to wait until I was 16, and then I could come back and see if anything more could be done.

In April 2007 I went back to the same Surgeon and he said that I could have another operation to tighten the skin up more as I had obviously grown. So on July 5th I had the operation, and I was awake, which was absolutely terrifying for me. However everything went well, and my scar is now even smoother, which I am pleased about, but I will be returning in June this year to see if there’s anything else that can be done.

Living with Multiple Hemangioma has been hard at times. Although I have been lucky that I haven’t really been bullied about it. I think I owe this to my Mum. She has always said to me since I was little that I was no different to anybody else, and I was to take no rubbish from nobody. My Mum made me a strong child and now a strong young adult. She pushed me to do everything that I might find scary, especially with scars. We dealt with people staring together because my sisters were older than me, it was just me and my mum against the world when I was little. I am insecure sometimes, but I’ve come to accept that this is the way I look, and if anyone is ever mean to me about it, its them with the problem, not me!

Me and my parents were so surprised when I found this website, I think its brilliant because when I was going through this as a baby, there wasn’t really anything for my parents. This site is great because it enables frightened parents, or people like myself to come and talk about their experiences and realize that there’s lots of people out there who are going through, or have been through what you have. It helps people not to feel alone, and that there is light at the end of the tunnel.

Thank you very much for taking the time to read my story, I know it was rather long. I hoped you enjoyed it and that it may even have helped someone :)

Here are some pictures to show how it looked when I was a baby. I will post more in a seperate reply of me now because it only allows four.




ShaiPearce1990 03-04-2008 02:05 PM

And me now :)





nickbar 03-04-2008 05:59 PM

Thank you so much for sharing your story! This is a huge gift for the families here unsure about the future. You are beautiful! Amazing results. You will never know to the extent you have helped people by sharing your story and photos.

Corinne

rhouwman 03-05-2008 02:25 AM

Shai - THANK YOU so much for sharing your story. As Corinne said, there are so many parents out there wondering how the future will turn out. Your story is amazing!
Robin.

elysmom 03-05-2008 04:07 AM

Thanks for sharing your story! I agree, you look amazing.


Cristina mom to Elyse
PHACES SYNDROME

swsc 03-05-2008 02:38 PM

Shai:

I sent you an email, so please let me know if you received it.

Again, thank you so much for sharing you story!

Glenda, VBF Chapter Director

KristieinStMarysGA 03-05-2008 03:03 PM

Thank you for sharing your story.


I admire you so much, your parents seem to have done a fantastic job.

Your story is going to help a lot of the parents on here.

Thank you so much for sharing.

ShaiPearce1990 03-05-2008 03:52 PM

Thanks so much for all the replies to my story! Its means a lot to me! Thank you!!

In reply to Glenda: I have just checked my email and replied :) :)

yury_ramirez 03-05-2008 05:58 PM

Thank U For Sharing Your Story, Your Results Are Amazing...i Know Our Journey Has Just Began With My Daughter But Im Looking Forward To The Day Shes H Free.... Xoxo Yury 8)

eprmo 03-05-2008 08:23 PM

you were a beautiful baby, and now you are a beautiful woman. I too thank you so much for sharing your story. My daughter is 18 now, and we too were alone throughout her hemangioma journey. I believe she grew up to be a beautiful and secure young woman, and I hope someday she decides to write her story,and share her feelings, which will help other families like I know you are doing now.


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