Heart disease is the leading cause of child death in Australia, accounting for one in three childhood deaths. While some patients require only minor surgical procedures, others need major operations to improve their health. Researchers are studying the outcomes of one of these operations, known as the Fontan procedure. A lot of patients born with abnormal hearts cannot have their heart repaired with two pumping chambers (ventricles) like everybody else. Most of them are born without part or all of one pumping chamber. They are said to have a single ventricle. These patients with the most complex forms of heart disease can lead an almost normal life after the Fontan operation, in which the blood to the lungs is redirected to bypass the heart.

Since its conception 40 years ago, the Fontan procedure has given a lifeline to an increasing number of children, allowing them grow and enjoy a good quality of life. However, there are still many unanswered questions about their long-term health prospects.

To find out how we can help these patients in the future, a registry has been established to collect health information on all Fontan patients living in Australia and New Zealand. It is hoped this information will help researchers and doctors determine the medical needs of patients to improve their long-term health and life expectancy.