Hypoplastic left heart syndrome (HLHS) is a congenital heart disease (CHD) and requires surgical intervention involving the Norwood and Fontan procedure. Bethan is being treated at Birmingham Childrens Hospital.

 

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 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.It’s been an amazing turn around in fortunes. Beth had a second stage operation in late 2004. Further hypoplastic left heart syndrome surgery will be required later this year, 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 5 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 Bethan has raised around £8400 to date!

CLICK HERE for latest news about Bethan                      Bryan and Mandy Edwards - March 2010

My mummy and daddy have written about me in a 100-page book. It tells you all about my first year and my condition called hypoplastic left heart syndrome. I was too young to remember but you can read all about it, and help my mum and dad’s favourite charities - Birmingham Children’s Hospital and Edward’s Trust . Just click the link: Buy book on the left.

 

“Powerful and honest - a compelling memoir” - A leading Literary Agent