What is it?
Fontan is a surgical procedure used for children born with only one functioning ventricle in their heart. The Fontan procedure creates a pathway for blood to return directly to your lungs for oxygen. This allows the working ventricle to continue the hard work of pumping blood out to the body.
While the procedure can be very successful, Fontan circulatory failure can occur when the working ventricle is not strong enough to pump all of the blood to the body that is needed. This may lead to heart failure. Heart failure occurs when a dysfunctional heart is no longer able to circulate blood and oxygen to keep up with the body’s demands.
Who does it affect?
All patients with only one functioning ventricle are candidates for the Fontan Circulation procedure. Patients who undergo the Fontan procedure are subject to Fontan circulatory failure.
How is ACTION helping?
We bring healthcare experts, patients, caregivers, researchers, and industry members to work together to harmonize care practices, develop new care models, perform research and educate patients, caregivers, and providers and to ultimately improve Fontan patient outcomes.
Without Fontan surgery, these single ventricle infants have a high likelihood of death. The Fontan surgery is an excellent life-saving surgery that allows infants to live into adulthood. The Fontan surgery, however, has a unique set of complications and some individuals who have had a Fontan surgery end up requiring advanced cardiac care during childhood or as an adult. Our current project aim is to assess when individuals with a Fontan are being referred to specialists in advance heart failure cardiology. We are working to understand whether clearly defining patient issues or events that should prompt specialist referral will improve patient experiences and outcomes after referral, and subsequently improve outcomes after VAD or transplant.
Our providers have developed consultation, referral, and post-VAD care protocols based on real world data and collective clinical experience.
Who is ACTION working with on this?
We are collaborating with Cardiac Networks United, including the Fontan Outcomes Network.
