Hello Everyone

My name is Lesley I am mum to Callum age 11 and Ruby age 4. Ruby was diagnosed with EA when I went for a routine scan. At this stage into my pregnancy thats all we knew was wrong with her. When Ruby arrived we were told that she had ‘Charge Syndrome’.

Charge Syndrome is a complex condition with many complex needs and medical conditions. Anyway, Ruby hasn’t had to have anything done to her heart at the moment and we go for annual check up’s at Harefield Hospital. We went for her annual check up last week and were told that her EA has gone from mild to moderate now, we have to go back in six months time

Ruby has had so many other problems that I have never given her EA much thought but it is always in the back of my mind. Now we have been given the news that it has got worse since last year it is very much in the front if my mind now!

I am very glad to have found this website and look forward to chatting to you.

Lesley

Posted by Lesley.

1 Comment »

  1. Hi Lesley,
    I am a new mum to Bethany, aged 2 weeks. Like ruby, Bethany was diagnosed with ebsteins before birth. She has also been diagnosed with charge syndrome but as yet we don’t know the full extent to which this will affect her. Bethany also has a hole in her heart, unrelated to ebsteins and will undergo surgery next week to close this. We are hoping after this that that the ebsteins will be manageable.
    It seems at the moment we’re finding out new things each day and there’s a lot to take in!
    I look forward to chatting with you,
    Hannah

    Comment by Hannah — November 17, 2011 @ 7:09 pm

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