The Australian New Zealand Fontan Registry was created in 2009 as a population-based repository of Fontan patients’ data. It aims to promote a greater understanding of these patient’s short and long-term health outcomes, as well as factors which can be modified to improve health and well-being. The database is currently 1622 all living with a single ventricle anatomy.
Every year an Education Day is held, either in Australia or New Zealand, where families get to listen to some of the best in paediatric cardiology.
Julie Neilsen is the NZ Patient/Parent representative on the Registry Steering committee and has attended all meetings. “My personal interest is the on-going discussion about the use of blood thinners for patients who live with a fontan circulation (single ventricle). Warfarin, Aspirin or other or nothing? The options for each individual and the “best choice” remind me how precarious and new this journey is. Having the “numbers” and the related outcomes to look at, really help the decision-making process. Then there is the exercise and fitness recommendations for these kids. This is a complete turnaround from when my daughter was growing up 30 years ago and we were instructed to monitor this activity carefully. It makes sense and now it is evidence based – good muscle tone helps blood circulation for everyone – even fontan kids. It’s a comprehensive weekend with lots of learning, new ideas, gratitude and awe. I have been truly blessed to have had my CHD daughter born in this era”.
Created on: 15 October 2019