When our first son, Thaddeus, was born, we knew very little about Congenital Heart Disease. We were healthy. My pregnancy was textbook perfect. No history in either family. Things like that didn't happen to families like ours. But CHD can happen to anyone. It happened to our son.
We lost our beautiful boy when he was 16 months old. He was diagnosed just after birth with Total Anomalous Pulmonary Venous Return. After his innitial open heart surgery, he developed Pulmonary Vein Stenosis. In his case, the PVS affected all 4 of his pulmonary veins, and was aggressive and reoccurring. Doctors would "fix" the issue, and within 3 to 5 weeks, it was back. He spent most of his life behind hospital walls, confined to a bed. PVS can be absolutely debilitating and lead to so many more complications.
PVS took our son from us, long before his passing. Because of PVS, we never heard him say his first words. Never saw him play with toys, eat table food, roll over or crawl. So much was lost when our son was given this diagnosis.
Our son was part of a drug research trial at Boston Children's Hospital. He is helping to pave the way for better treatment options, even after he has gone.
Please help us raise awareness and donations to help Boston Children's Hospital fight this disease, so that children like Thaddeus can have a better chance at a quality life.
Pulmonary Vein Stenosis (PVS) is a rare condition in which the veins that carry blood from the lungs back to the heart are narrowed. Boston Children’s Hospital has a team specifically dedicated to PVS. Boston is leading the way in PVS research and over the last 20 years has been at the forefront of research making many strides in trying to battle this deadly disease.
Currently, they are working on figuring out what is driving PVS. With the help of the engineers and surgical team, cardiologists and researchers are using computational fluid dynamics to model flow patterns along with patients’ anatomical data to determine a cause of pulmonary vein stenosis. These studies can reveal if the way the vessels are shaped and the way the blood is flowing through them is an underlying cause of pulmonary vein stenosis. If they are successful to find ways to refine blood flow pattern they will be able to reduce the occurrence and prevent PVS.
We NEED your help. Each share, each dollar donated CAN make a difference. Project Heart will match EVERY dollar donated! Please consider a tax-deductible contribution! Thank you!