top of page

Fontan and You

In 2020 Ros created a website to support adolescents and young adults who have a Fontan procedure as part of their single ventricle cardiac management. This is the same surgery as Ros and Rob's son received in stages between babyhood and the age of five after he was born with tricuspid atresia. This is a particular form of congenital heart condition that requires major and complex open heart palliative surgery called the Fontan.

Fontan surgery has meant that children born with the most complex congenital heart conditions are now enjoying a life into adulthood for the first time. But with these welcome physical improvements, it is apparent that adolescents and young adults with a Fontan procedure need emotional support in combination with cardiological support.

In most cases, young people with a Fontan look like there is nothing wrong with them at all. Sometimes this is an advantage but it can also mean that teachers, employers, family and friends do not always believe a person with a Fontan has a major and complex medical condition. They do not understand that this condition can also impact energy, anxiety and restlessness. Because a Fontan is a relatively new procedure, this group of young people do not have clarity on their life expectancy, which is a difficult thing to consider when you are growing up.

The website is for teenagers and young adults with a Fontan. The aim is to offer information in a way that is inviting to read and that uses accessible language. Fontan and You tries to address the topics that matter to young people. The site is dedicated to William.

In the first 3 months of its launch, the site was viewed in 25 countries. It has been welcomed by several cardiologists who specialise in the Fontan procedure. Two (one in Australia and one in America) have been kind enough to offer to be contacts if Ros needs clarification on anything she writes. A number of Fontan recipients have also written to Ros to say how much they have loved the site, and of course, that is what matters most because is created for them.

Be kind to everyone you meet, no matter their age. You never really know what they're dealing with, and often they won't even tell you.


bottom of page