Our second daughter Bethan was born in 2004 with a serious heart condition called Hypoplastic Left Heart Syndrome - in short, only one side of her heart works. The condition is incurable, and until relatively recently, the prognosis was very, very poor. Surgeons have now developed 3-stage surgical techniques that can prolong life, all be it a high-risk procedure.
Bethan underwent open-heart surgery at the world-renowned Birmingham Children’s Hospital (U.K.) at 3 days old. The hospital stay should have been around 3 weeks. It was, in fact, nearly 4 months!
In her short life, Beth has experienced open-heart surgery three times, contracted 2 life-threatening bouts of septicaemia, no fewer than 6 heart attacks, several catheters and diagnosis of Turners Syndrome. 5 arrests occurred in a single morning in Intensive Care, when the septicaemia had a stranglehold on her. On two occasions it was ‘touch and go’ whether she would survive. In July 2004 she was so poorly that the only option was further extremely high risk open-heart surgery. Fortunately Bethan proved to be a little fighter.
Since then, it’s been an amazing turn around in fortunes. Beth had a second stage operation in late 2004. Further hypoplastic left heart surgery will be required that should help her cope into adulthood. However, there is a likelihood that she will need a heart transplant when she reaches adulthood.
Bethan is a very happy 2 year old who is full of life despite the severe disabilities she is faced with. We hope you enjoy her site and please buy our book: “Bethan - A year in the life of the baby with half a heart” or perhaps donate on-line to our two favourite charities. With your help with have raised around £7000 to date!
Bryan and Mandy Edwards - March 2008
