The majority of my friends and family already know Evan's story, but it is important to continue to share it in order to create awareness, and ultimately change.
Evan was born with a rare critical congenital heart defect, known as hypo plastic right heart syndrome (half a heart). There is no cure. Instead of 4 chambers, Evan only has 2. He had 2 open heart surgeries, one at 4.5 months, and another just shy of 3. These surgeries are palliative, and the next step would be a heart transplant. We do not know when he will need this risky intervention, but hope that he can live a full life for as long as possible with the heart he was born with.
Evan goes to Boston Children's every 6 months for a number of tests to ensure that his heart his functioning well. Each time we make this visit, I agonize that this will be the one when he is listed for a heart. Thankfully that has not happened yet. We did learn in August that Evan may need another open heart surgery in the next 1-3 years on his mitral valve.
We can do better for kids like Evan, and all individuals living with half a heart. And that begins with research. But research needs data, and a lot of data to make the results significantly reliable. This is exactly what the FORCE registry is set out to do. Dr. Rahul Rathod spearheaded this initiative 3 years ago. Since then it has grown tremendously becoming the largest Fontan registry with over 3,500 patients enrolled across 30 children's hospitals using machine learning to support the platform. This database is unique as it stores MRI images, no other Fontan databases have this capability. Why is this significant? It will enhance research, and give doctors a new and better way to predict when a patient is going to be in trouble. Then doctors can use medical intervention before transplant is the only option left. MRI images are the most predictive tool that cardiologists have today that help to detect any change in the individual's heart function.
Babies born with half a heart now have a chance of survival with 3 open heart surgeries, though sadly 40% pass away before the age of 5. The surgeries are not a cure. Please help Dr. Rathod and his team do better for Evan, and all people like him.
Watch our video on The Force Registry.