Newborn with PWS - Vascular Birthmarks Foundation Forum
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  #1  
Old 05-01-2010, 05:50 AM
sunfresh sunfresh is offline
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Default Newborn with PWS

Hi there!
I am glad to have find this website.

On the day of delivery, all parents wish to hear from the Gynae that your baby is ok. But i hear from my gynae "your daughter have birthmarks on hte legs and on the face". then followed by the Pediatrician who commented that my gal has Protwine Stain.

I leaped with joy when finally i am able to meet my daughter for the first time. but my heart sank at the same time, thinking "why does it have to be on her. Her life barely started!!"

Superstitious relatives and friends start to saying that it is beacuse we painted the baby cot, so that is how the "paint" got unto the baby.

I really wanted to cry but yet i have to be strong for the baby. She needs my breastmilk, she needs all the cuddle she can get from me.

Everyday when i breastfeed her, i looked at her..sometimes into her eyes. God, she is so innocent and so unaware of what is going on. How i wish i can take over all these pain. And i cried and cried. I really do not want my gal to be outcasted by the society especially we are living in a materialistic world.

Docs have told us to go thru laser. yes , i would want her to go thru the laser treatment. She has a splash on her left eye, her buttocks downwards and her genitials are splashed with PWS. Buti i do ont uderstand why some most website says that it is not a permanent solution and so she will probably have to go thru this treatment a lifetime.

I just want my daughter to find her own tru identity and be strong. And able to find her belinging in the socitey..able to be optimistic, able to date, get married, have children , have a career, able to serve God in her unique way..

is there a doc to recommend in Singapore?
Looking forward to hear from the rest!
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  #2  
Old 05-01-2010, 10:38 AM
missy missy is offline
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We do have a couple of families in Singapore, but they travel to Hong Kong to see Dr. Chan. Is that a possibility for you? There is one person I know of who was being treated in Singapore. See this link:

http://174.120.2.174/board/showthrea...ight=singapore

Welcome to VBF!! Let us know how things are going for you!

Missy
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  #3  
Old 05-02-2010, 12:57 AM
kaykay kaykay is offline
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Quote:
I just want my daughter to find her own tru identity and be strong. And able to find her belinging in the socitey..able to be optimistic, able to date, get married, have children , have a career

you sounds like my mom

take care of your childs health. teach her the best you can about herself, what she has. Yes there will be challenges but there's alot you can't control with society. Just bring her up the best you can an hope she can believe in herself and help her to if she can't
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  #4  
Old 05-02-2010, 01:00 PM
sunfresh sunfresh is offline
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Quote:
Originally Posted by kaykay View Post
you sounds like my mom

take care of your childs health. teach her the best you can about herself, what she has. Yes there will be challenges but there's alot you can't control with society. Just bring her up the best you can an hope she can believe in herself and help her to if she can't
Are you also with PWS?

I dunno how to do it. Maybe i am in my Post-natal blues. I just do not understnad why that we have been trying to concieved. and when i finally able to..We have to go through another challenge..why can't i be like any other normal parents who have children that they dun have to worry about PWS...
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  #5  
Old 05-02-2010, 07:16 PM
abatie abatie is offline
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Although my daughter doesn't have a port wine stain (she has CMTC which is visible from her right hip to her foot) I can understand the feelings you are having. I know that through my experience you do need to go through a grieving process but I know that I moved past this quickly. You will start seeing your daughter and not her port wine stain. At first I hated when people stared at my daughter and I always wanted her leg covered up. Now I don't care who sees it and I hope that by sharing her story they may be more tolerate of the differences of others. The other thing is that when my daughter's medical issues became so much more complex than her CMTC my focus has had to turn from that and deal with conditions that are much more severe. She will always have CMTC and I am going to raise her to be proud of who she is (there are not a lot of people like little Becca in the world). The other bit that I have found is that the more open I am about Becca, not hiding her leg and letting others see it, and just going on with our lives others are much less uncomfortable.

That doesn't mean we haven't had our uncomfortable moments. We had a lady leave a swimming pool when we put Becca in and we have had several little kids embarass their parents with comments they have made. I guess what I am rambling on about is that the more you are comfortable and accepting the more comfortable and accepting others will be.
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  #6  
Old 05-03-2010, 07:22 AM
sunfresh sunfresh is offline
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i guess i have to go thruough the grieving process and get my daughter to the right medical treatment as soon as possible.

And also learning to accept the reality that this is it!! i gotta be comfortable with the gal that i just gave birth not long ago.

And yet its gonna take time. It is difficult for me to express this grief too depp with my husband cos my husband is a confident and optimistic guy. He just told me that she is going to seek medical attention and make sure we do it early so that she will not have much memory of it.

Now the thought of having another baby is scary..i am too afraid that I will not be abke to handle the next baby if also have the same case...

Thank you all of you for your cares and advices. and hearing me out.. even in my griefing period.
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  #7  
Old 05-03-2010, 08:12 PM
kaykay kaykay is offline
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Yes. I have a large facial birthmark on the left side of my face involing chin, bottom lip, cheek, left ear and extends into my head and neck and chest. I also have a large patch on my back.

The good thing ? is your child is gonna be real happy first couple of years until they begin to understand why other kids look at them different, make comments etc...I knew i was different in kindygarden but it wasn't until maybe 1st or 2nd year primary school it started to matter.

Enjoy the time while your kid is still just a kid. She's healthy, has so much to learn just like the rest of babies. Take it as it comes.

If you feel like you cannot talk to your husband, I think do not heistate to get consuelling for yourself either. Its not your fault. It just happens. Your a mother and i think its natural how you feel but you will one day soon be able to not feel so down and focus on keeping her healthy.

when she's starts to bring boys home, doing drugs, drink, comes home late, has promiscous unprotected sex while still under the age of 13 then you know you have a problem. ha ha ha ha ha ha ha

I can't really comment on having other children. My mother had several pregnacies but gave birth to 3 babies. 1st, she died after birth from other complications but no birthmark. 2nd, my brother was born with his cord wrap around his neck. no birthmark. 3rd, me. I have a birthmark.

So, you could very well have perfectly healthy babies

Last edited by kaykay : 05-03-2010 at 08:22 PM.
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  #8  
Old 05-04-2010, 06:53 AM
sunfresh sunfresh is offline
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kay kay,

thank you for your encouragement. but right now my happiness comes with sadness...

and probably i will seek counselling soon..
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  #9  
Old 05-06-2010, 12:29 PM
Charlotte's Dad Charlotte's Dad is offline
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Hi Sunfresh,

First of all, congratulations on the birth of your baby girl. I know it must all seem overwhelming right now, but do try to enjoy these magical first weeks with your baby.

I live in Singapore and have a three year old daughter with a pws that covers her left cheek. She started laser treatment at 4 months of age in Hong Kong (she was born there and we moved to Singapore when she was 18 months old). She has now had 15 laser treatments with Dr Chan in Hong Kong and her birthmark is considerably lighter than it was at birth. We chose to continue treatment with Dr Chan in Hong Kong as we are very happy with the results to date and we trust Dr Chan implicitly.

There are a number of doctors in Singapore who treat port wine stains. The doctors I know of are Prof Goh at the National Skin Centre and also Dr Yuin Chew Chan at Dermatology Associates (he has offices at Paragon and Gleneagles).

If you would like to discuss anything 'off-line' and you are happy to share your email address, I will contact you directly.

Wishing you all the very best.

Charlotte's mum
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  #10  
Old 05-06-2010, 10:02 PM
missy missy is offline
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I'm so glad you came by!! How is everything with your family?

Thank you so much for the information.

Missy
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