I recently had a baby girl that was born with Klippel-Trenaunay-Weber Syndrome

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I recently had a baby girl that was born with this syndrome, but the doctors don't even know what syndrome she has.I was really scared at the beginnig,she is only 7 weeks old she has half of her left body redish. They did some test on her she came out normal. I really don't know what to expect.

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  • Posted

    Hello,

    I understand my daughter is now 11 yrs old and we have livid with this since she was borne. I keept thanking that it was something that I hade done, It's not. Shelby is coping with all of thise she is a strong girl and so will your baby. Dont wory just have fath and thank god everyday that he give you that beautiful baby girl,. There is other people out there that have children with this..

    Your friend

    Shadow

    [i:97c64172de]This message was automatically imported from the original Patient Experience[/i:97c64172de]

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  • Posted

    Hi,

    I'm Fuzz. I am a 27 yr old man living in West Virginia.I also was born with portwine stains from my left foot to my left buttux. i have a little thrombosis and a mild pain with it but overall its not too bad. i learned to wear pants more often so i didnt have peep asking so much but i have a great active life. I played sports and still do to this day! Some limb swelling occurs but not sufficient. Get a sonogram done if u haven't already.

    Best wishes,

    Fuzz

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  • Posted

    Hi,

    I'm Fuzz. I am a 27 yr old man living in West Virginia.I also was born with portwine stains from my left foot to my left buttux. i have a little thrombosis and a mild pain with it but overall its not too bad. i learned to wear pants more often so i didnt have peep asking so much but i have a great active life. I played sports and still do to this day! Some limb swelling occurs but not sufficient. Get a sonogram done if u haven't already.

    Best wishes,

    Fuzz

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  • Posted

    Hey I have z three year old who has this and I was the same. He is doing great really strobg and developing above his age group. Only problem I have is getting him shoes to fit his poor feet. Chin up its hard but ull be fibe in still learning too x
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  • Posted

    Hi i felt the same when my daughter was born ,they didn't even realise anything was wrong it was me, i noticed her head was large she had tiny little arms and hands 1 big leg and 1 normal size leg.She also had clubbed feet, and her toes and fingers were webbed she had port wine birth marks on her beautiful face ,she also had a raised red birth mark all over her body she only has a a few patches of her belly on her normal skin, god and that was 23yrs ago and they didn't know what was wrong for at least 4days .I always remember going to group meetings at the hospital but i felt so alone cause her syndrome was so rare .she has the most beautiful blue eyes and blonde curls and was such a happy baby and even now she is so laided back she has never been able to walk but would get around bum shuffling ,but sadly after having a cyst removed in 2007 she was really poorly and in intensive care for 3 months the doctors were so shocked that she pulled through ,.but we are all so proud of her, she is 1 of 8 children so you can imagine how much she's spoilled, she has them all running around for her ....and why should'nt she ,she deserves it love her
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  • Posted

    Hi

    I've had vascular malformation since birth. It affects my entire left leg and buttock. I was born very poorly. I had wounds that kept on appearing which got infected. I almost died of meningitis several times. By age of three my parents and the doctors decided to amputate below the knee. At age 10 I had a further amputation just above the knee.

    I'm 31 now, I work at my local Council and I'm studying for a degree in psychology. I live a 'relatively' normal life, I have lots of good friends and family. I'm sure your children will grow up to be fine, as long as you love them and teach them to love themselves.

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  • Posted

    I am almost 34 and was born with KTS on my right lower extremity. If you have questions or need guidance I am more than happy to speak with you. I am also a physical therapist and athletic trainer and I know a ton about my condition. Make sure you get a vascular surgeon for your daughter to start seeing whom you like and trust. I did not need a compression stocking till I was 5. I started w knee high then moved to thigh high in my teens and now i have full length at 40-50mmHg now with a boy short on my opposite leg. If i dont wear shorts or skirts you cant even tell I have anything wrong. Message back w questions.
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    • Posted

      Hi svelez2012

      My daughter displays most symptoms of this condition, but the KT prognosis has not been made by any doctoryet. Who should i go to ? I am at my wits end. Thanks

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