By Leanne | Rainbow Trust Mum
When my husband Dean and I went for my 20 week scan, we were told that our baby girl had a heart defect. Doctors said it was so severe that she may not survive the pregnancy and if she did survive, she probably wouldn’t live for very long. There was a surgery the doctors could do that could help if she did survive but that had its risks too.
Against the odds, she survived and that’s why we called her Hope. Hope has Ebstein Anomaly. The right side of her heart is severely deformed so the left side of her heart has to work twice as hard to keep pumping oxygenated blood around her body. When she was born, she was whisked away for heart surgery to try and repair her damaged heart.
Since Hope returned from hospital we have had to watch her constantly to monitor her condition. We needed some support so I looked around and found Rainbow Trust Children's Charity online. They came to assess us and a Family Support Worker called Eleanor started supporting us almost immediately. She’s been just brilliant. I don’t drive, so Dean had had to take time off work to take Hope and I to the hospital. Eleanor was able to take us to Hope’s regular hospital appointments and played with Tyler in the playroom while I was in with the doctors. This meant that Dean could stay at work and Tyler still had some fun, even at the hospital.
When we were home, Eleanor helped me with Hope, feeding her when Tyler needed me or playing with Tyler when Hope had appointments. It made life so much easier for us and it relieved so much of the guilt I had felt. Tyler was still getting to have fun and Eleanor’s support meant I could spend time with him on his own knowing Hope was in very safe hands.
It’s such a relief knowing there is someone there to turn to who really does understand. Hope is four now and will need heart surgery again soon. For now, Eleanor helps us give Hope a great quality of life and while she has that, we are happy.
I don’t know what we’d do without Eleanor, she has become a very special part of our lives and I know I can call on her to help whenever she can. We couldn’t do this without Eleanor or Rainbow Trust.
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