Pulmonary Vein Stenosis Research

Pulmonary vein stenosis (PVS), or narrowing of the pulmonary arteries, affects 1% to 3% of children with congenital heart defects. Early diagnosis and treatment are crucial to improving a child’s quality of life.
Children’s Hospital Colorado has been caring for children with PVS for decades and in 2017 our PVS care took a significant step forward when we adopted a first-of-its-kind multidisciplinary approach. A group of experts at Children’s Colorado, led by Jenny Zablah, MD, established the Pulmonary Vein Stenosis Program to provide comprehensive care for this complex, progressive disease.
We recently conducted research following 224 of our PVS patients over a 23-year period. The results show that the survival rate of our patients exceeds the national average and has been rapidly increasing since 2017. Our one-year survival rate increased from 80% to 93%, and our five-year survival rate increased from 77% to 84%.
We continue studying the best ways to detect and treat PVS. Children’s Colorado is the first in the U.S. to use optical coherence tomography (OCT) for PVS patients, to streamline procedures and help predict disease progression. We’re also investigating blood biomarkers and gathering information about the causes of PVS. Eventually, we hope our treatment and research breakthroughs can prevent this disease altogether.
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