It is our desire that this web site be dedicated to children born with a congenital heart defect, and to the families that love them.

Most of the stories here are of children born with a very serious heart defect called Hypoplastic Left Heart Syndrome (or HLHS).  It is our hope that by sharing these stories we may pass on all the hope, support and love that was given to us during our search for information about what could be done to save the life of my nephew.  For many weeks we searched for other Australian families with HLHS children and started to despair that there weren't any. It was a very lonely feeling and my sister Joanne and her husband Peter thought that the only way to save their son was to travel to America where the success rates for the three staged surgical reconstruction was very good. Thankfully we discovered Melbourne's Royal Children's Hospital also had a very good success rate and so that is where they chose to go.

It seems that in some states in Australia surgery is not viewed as a very good option and often parents are encouraged to either terminate the pregnancy (if diagnosed before 20 weeks) or to take the compassionate care option and take their child home to die naturally. Whilst we believe that the final choice is a very personal one to be made only by the parents, we also believe that families should be given as much accurate and up to date information as possible so as to make an informed decision. It is not an easy decision to make and only as parents can you decide what you feel is best for your child. We can not offer any medical advice in the pages to follow and that is not the purpose for this web site. We can however direct you to where you may find the best available information and for us that was the Royal Children's Hospital in Melbourne. This is where most HLHS babies go to have the surgery necessary to give them the gift of life.

Not all of these stories have happy endings but they do need to be shared in order to show the whole picture of HLHS. For those little ones that are now in heaven we wish to keep alive the memories of their short stay here on earth. They may not have stayed long but they touched many lives and will continue to do so. I also want to thank the parents of these babies as even in their grief they continue to reach out to others, offering their love and support and praying that others will not have to walk the path that they are now on.  If you have lost a precious child then please visit a special page we have for those that are hurting just click on the heart to visit.

There are also stories that will bring hope to the hearts of those that are only just beginning on this journey. Perhaps someone having discovered that they will be going to have a child with HLHS and longing to be able to speak or write to others that have already traveled this road might happen upon our page. If that is the case we do know that it's a tough journey and one that can get quite bumpy in places. Sometimes the journey seems long and never ending but I know that Joanne and Peter will tell you that they are in awe of the strength and courage that their little boy has shown and that every step they  take is one that is worthwhile. Joanne and Peter would not swap him for anything in the whole world.

Although none of us knows the final outcome for a lot of these children one thing we do know is that each parent that we have had contact with tells us just how precious and special their heart child is. Those that have survived bring incredible joy and love into the lives of their families. Some even tell us that if it were not for the scar that their child wears as a badge of their courage, most people would never know their secret.

So this page is for all of these special children both living on earth and those in heaven, may they inspire you as they have me.

Deb Rennie.