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Thread: Hello,new to this,need advice.

  1. #11
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    Hello -

    I am so sorry to hear about your babies,, and this is most likely caused by a diagnosis of Complete Heart Block in the child. I was diagnosed with Lupus when I was pregnant with my second child and I was 20 weeks along. I had had a miscarriage at 20 weeks prior to this pregnancy (one healthy child though that was 3 at the time), and they did not know why, so I can feel your pain. When I was diagnosed they also diagnosed my baby inutero with Complete Heart Block. This occurs by the antibodies of Lupus attacking the baby's heart and causing the AV node to become scarred and not function. We are very fortunate, (We have a lot of faith and believe prayers got us through this difficult time), that my baby was born 100% fine except for the Complete Heart Block. She is now 12 and is completely normal in all other respects. She had pacemaker surgery at 3 and has had two other surgeries. She just recently went through a traumatic surgery where her lead broke and she had to have another surgery to go and get that lead out. She is a beautiful, active, athletic girl that you would never know has a pacemaker. During her last two surgeries we insisted on a plastic surgeon being there to close her so her scars are miminal - you can hardly see them.

    I went on to have two more healthy children after her,,, so please know there is always hope! Complete Heart Block is a rare complication,, but if it does occur it is very manageable.

    SouthShore

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    Susanne (03-22-2011)

  3. #12
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    hello sorry to here about what you are going through at 18 i had my first miscarriage then 21 i had my son born4 weeks premature then i had 2 more miscarriages then my daughter she was 5 weeks premature then i had 3 more miscarriages and 7 years later had my daughter born in 1995 9 weeks premature then i became pregnant a year later and at 20 weeks my baby died and i had to deliver him stillborn the pain was so overwhelming that my husband i decided enough was a enough and he had vasectomy i was diagnosed with lupus 3 years ago and am now finding out from rheumi that lupus was probably the cause and if they had investigated my first few miscarriages for lupus i may not have lost my son at 20 weeks and all my other babies i have all of the symptoms you describe and more hope you get more answers soon hugs kim l

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    Susanne (03-22-2011)

  5. #13
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    hi Susanne! Welcome to WHL. We are so glad that you found us! None of us can give you medical advice but you do need to have the doctor check things out. There are a lot of things going on it your body (as you stated in your initial post) and it is time for someone to put all the pieces together. While you are waiting, once you get a diagnoses (of Lupus or something else) you have now joined our WHL family! We are always here for you and someone here will understand
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Susanne (03-22-2011)

  7. #14
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    Quote Originally Posted by Susanne View Post
    OMG I'm so sorry you've gone through way to much gosh I can only imagine. You have such strength to Carrie on as u do. And you still find the time to be here for all of us on this forum. That's great you need this to vent to. God bless you and I pray for this horrible disease to soon find a cure. Xoxoxo
    Hi Susanne,
    I hope your feeling abit better mate, it always sounds a soft question but we do have our odd days of feeling better.

    With what i've gone through i just hope i can help other's with info and ailments connnected to it. xxxxx

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