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  1. #1
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    Default Dealing with an abnormality in a newborn.

    My DS was born 2 weeks ago at 36 weeks after my hind waters broke at 35 weeks.

    DS is small but healthy for the most part. He is feeding well and a good sleeper, a very placid little man.

    He was born with a massive varicose vein in his arm that runs from his shoulder to his hand. It is very raised, lumpy and blue/purple. He had to have an ultrasound on the arm at 4 days old which determined that his arm is being supplied with too much blood. If surgery is not performed at some point his arm will grow to be bigger than the other one.

    Problem is my paed and every other Dr don't really know what they are dealing with as nobody has seen it before. We have been told there may be a specialist in Sydney that can possibly help but nobody in WA.

    He needs to be injected with dye and to have a special scan to see the blood flow.

    While we have been told this is not a life threatning problem I am worried for my little man. I really just needed to vent...

    If anybody else has had this and can shed some light or offer some advice please do.

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    I wish i could offer something for you but i cant.

    Instead i just want to wish you all the best in regards to your little man it must be such a tough time when no-one can give you answers

    If you do have to come to Syd for treatment remember us Hubbers over here will help you out in any way we can

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    Quote Originally Posted by allyoo View Post
    I wish i could offer something for you but i cant.

    Instead i just want to wish you all the best in regards to your little man it must be such a tough time when no-one can give you answers

    If you do have to come to Syd for treatment remember us Hubbers over here will help you out in any way we can
    Thank you. I don't really expect anybody can help, just needed to get it out really.

  4. #4
    Nowhere's Avatar
    Nowhere is offline Winner 2007- Most Supportive Of Feeding Other-Than-Breast Award
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    Hugs to you and your family, i have no infomation on yours bubs situatuation in particular, but wanted let you know we are thinking of you, I do how ever know what your going through as far as your little one needing surgery and not being born exactly how you imagined it to be, Its a shame that none of the drs at PMH can perform the surgery that really sucks, as they are a greart a hospital for most things, I haveheard a lot about Sydney childrens hospital however and its all good stuff that i here some of the best drs and surgens in the world work there so you preciuos little bub wil be in the best hands,

    how soon do you need to have the op performed, is bub healthy other wise I really hope so

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    I hope you get the answers you need...
    I'm sure the Dr's are going to do everything they can to ensure your little one is well looked after.
    Maybe after the scan they will be able to tell more.
    I would especially like to know how you go as all of us would... x x take care

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    i know what you are talking about,
    a friend of mine has 5 children and 2 of them have this.
    the eldest daughter is 20 and she was born with it from the shoulder to elbow too....on the under side of her arm
    her son is about 7 now (jezz time flys) and he was born with his on the back of his leg....


    she has told me a litttle about it but not much...i can find out more if you would like
    Last edited by SorenLorensen; 02-10-2007 at 21:25.

  7. #7
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    Quote Originally Posted by flick83 View Post
    i know what you are talking about,
    a friend of mine has 5 children and 2 of them have this.
    the eldest daughter is 20 and she was born with it from the shoulder to elbow too....on the under side of her arm
    her son is about 7 now (jezz time flys) and he was born with his on the back of his leg....


    she has told me a litttle about it but not much...i can find out more if you would like
    Wow finally somebody might have seen something similar!

    I would really appreciate anything else you could find out for me. We honestly have no idea what we are dealing with.

    Thanks ladies for your support and kind words. Your're all lovely people.

  8. #8
    Loopy Linda's Avatar
    Loopy Linda is offline Creator of gorgeous guys Carer of beautiful girls
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    hi,

    i am sorry for your situation, and that to help you have to go to other side of country, that is a shame.

    My little one had to have surgery in the sydney childrens hospital (randwick) when he was just 4 days old. Here is where i may help you a little. the nirses there are the best you could hope for, they are caring, understanding and take the time to get to know you. they will explain everything to you and do everything possible to help.

    the dr's are the best around...they helped my boy!

    i just wanted to try to ease your mind a bit about the hospital, seeing as our hospitals are gettting such a bad rep at moent ( deservedly in most cases too) but the children's hospital isn't just a public hospital...as my husband keeps saying you walk through the doors and you enter a different world.

    As an aside if it is Randwick you are going to the coffee is good in the cafes, the volunteers cafe on level two of POWH is fresh and good and find the fairy garden while you are there...

    Linda

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    im sorry about what you are going thru. both my boys were born with problems but ds1s were obvious. he had floppy face muscles, facial palsy and was tongue tied. he didnt look normal. but he looked more normal if he was faced one way due to the palsy so i liked to keep him that way. seeing him the other way made me sad as they didnt know wat was wrong with him. all things went thru my head like if my child is retarded will my friends just say he is cute to be nice, will i still love him the same etc etc.
    the good news is i did bond with him and he is now a healthy, if not cheeky 6 yr old.
    my ds2 had to have dye and be xrayed but it was thru a catheter. he didnt know any different.

  10. #10
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    Thanks ladies. I appreciate the support, it's such a testing time. We found out last week that DS also has a heart mumur now so we are off to the cardiologist this week. I hope it's nothing and not related to his arm in anyway....


 

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