Leana B., born 2007. The girl from the canton of Bern received a heart transplant in 2009.
“Sometimes there are these horrible nightmares. Leana will wake up screaming and shaking. You can actually feel her fear. By the time she wakes up the following morning, she’s back to being a happy child again. Because her speech development is delayed, we as parents can only imagine how Leana feels.
She seems to be happy in herself and the world around her – she is inquisitive, open and friendly. You get the feeling she’s found her place in the world, as if she’s saying: ‘I’m Leana and I belong here’. When you look at her – how proudly and naturally she helps us lay the table – it’s almost impossible to believe how much she’s been through already.
Leana was born with a tiny hole in her heart. She had an operation when she was six weeks old, and everything seemed to go well. But we realized that she was only making very small progress in her development, how she couldn’t remember things she had already learnt, and how her health just kept getting worse. The diagnosis turned our world upside down: myocarditis, or a weakening of the cardiac muscle. Her heart wasn’t strong enough to pump sufficient levels of blood to her entire body.
We were given a horrendous decision to make: we were told we could either ‘enjoy’ the time we had left with Leana as best we could, or have her placed on the waiting list for a heart donation.
There were so many pros and cons for us to consider – until Leana showed us the way, and we decided to do everything we possibly could for her. Her condition got visibly worse, and she had to be given an artificial heart. Various operations followed, and at one point there was a complication: Leana was no longer able to move the left side of her body, and a small section of her brain has been damaged ever since.
Then, after only four months on the waiting list, it happened: our daughter received a donor heart. It really was a miracle! Within two months she was well enough to come home. Thanks to intensive occupational therapy and physiotherapy, she can now walk without any help. We’re so grateful to the unknown donor for the fact that even now, six years later, we get to know a new side to our daughter and discover new things about her every day!”