When Libby Andrew’s son Daniel was diagnosed with Congenital Heart Disease (CHD), there was no guide book to turn to, so the local mum decided to create her own.
Launched during February, which also happens to be CHD Awareness Month, Ms Andrew said Living With Half A Heart is the “book on the shelf that I couldn’t find when desperately needed”.
“For me for starters they told me to terminate (Daniel) and they told me he wouldn’t fit into anyone’s lifestyle,” she said. “I realised my experience could benefit another mum coming behind me.”
Daniel was born with half a heart, which is also located on the other side of his body (upper right) and facing the back. He has had four operations in his short life, and now has unique circulation, called Fontan, to keep his body working whereby blood without oxygen comes back from the body directly into the lungs.
All of the surgeries have been palliative to make Daniel’s heart work better, however there is no cure for his condition.
This July it will be three years since Daniel’s last surgery. Now in Year 1 at school, Daniel is described in the book as a “rambunctious, happy six-year-old boy enjoying life to the maximum”.
“It’s a giant achievement for him,” Ms Andrew said. “They said at 20 weeks he wouldn’t survive. But he’s got three big brothers and doesn’t understand that there’s something different about him. People who meet him have no idea about what he’s been through.”
Self-published, the book features 12 easy-reading chapters to help other families prepare for the world of CHD and surgery for babies – from diagnosis, to the variety of hospital stays and visits, and getting ready for your new arrival.
Libby described the book as “practical advice and tips” as well as “what I would’ve liked to have done better if I had the book” and said one of her goals for the publication is to provide hope to pregnant women and encourage them to make a good choice regarding termination or not when doctors provide advice at the 20 week ultrasound.
For more information, visit www.halfaheart.com.au