Our family spent over 4 months in Melbourne while he underwent surgery at the Royal Children’s Hospital. Although his recovery was not totally free of complications, over all he has done really well.
Since being home, he has come along in leaps and bounds. He is such a happy child, we almost forget he has a serious heart problem.
When our son Joseph was diagnosed with HLHS our lives were turned upside down. We were told that there was little that could be done for babies with this severe Congenital Heart Defect.
Doctors at Westmead Children’s Hospital in Sydney told us that although there was a ‘surgical option’, we should consider it very carefully as the long term outlook for Joseph was very uncertain. Even if he survived the three open-heart procedures, there was a real possibility that he would suffer some long-term mental and physical disabilities. They were also concerned about the stress Joseph’s condition and treatment would place on our family. It was suggested that it may be better to take Joseph home, without any treatment and let him die. Deep down we knew this wasn’t a choice we could make. For us, it was impossible to abandon hope.
We did however need more information on HLHS survivors. I searched the internet but initially could not find many encouraging stories. The medical information I came across on the net was also very negative. I was starting to think that perhaps the medical advice was right and there was little hope for our baby.
Fortunately, Joseph was transferred to the Royal Children’s Hospital in Melbourne and things started to turn around for us. The attitude of the medical staff there was very different. They made no promises but assured us they would do everything they could for Joseph. We also found out that there were other HLHS babies being treated at RCH. We got to know several of these babies and their families during our four month stay in Melbourne. The support of these families was invaluable to us and just one of the many great things Joseph has brought to our lives.
Joseph has also given us a determination to raise community awareness of HLHS. Our story is not unique. All the other families we met were also given a very grim outlook for their special babies. It seems that the general medical community is not aware of the advances that have been made in the treatment of HLHS. Although there is no cure for this condition, there are hundreds of these children worldwide bringing joy to the lives they touch.