Pulmonary vein stenosis (PVS) is a rare and serious condition in which there is a blockage in the blood vessels that bring blood from the lungs back to the heart. The blockage is caused by an abnormal thickening of the walls of veins. While PVS can occur in a single pulmonary vein, it most often affects multiple veins at the same time.
Heart surgery can enlarge the narrowed veins, while balloon catheterization can push the veins open. Some patients can be treated with just one surgery and afterward need only medication and possibly catheterizations. But surgery and catheterization are often short-term solutions for many patients because the blockage can recur in about a month after treatment, what is known as recurrent PVS. These patients require frequent surgeries and catheterizations, along with medication.
Meet Caroline
Caroline's journey with pulmonary vein stenosis is not just her own; it's a testament to the resilience of her entire family. Learn how Caroline was a rainbow for her family as they navigated the uncertainty of her diagnosis.
Why choose Boston Children’s Pulmonary Vein Stenosis Program?
Because PVS is rare and usually requires constant care, it’s important for your child to see a team of specialists that has experience treating the complex condition. The cardiac specialists of Boston Children’s Pulmonary Vein Stenosis Program have been studying the disease and treating children for decades.
Our program coordinates all aspects of care. Cardiologists and cardiac surgeons work closely together to offer proven and innovative treatments — including targeted drug therapy — for children who have been recently diagnosed and those who have recurrent PVS. We specialize in treating the most complex cases and most common forms of PVS by focusing on individual vessels. Depending on the patient, we choose the most appropriate interventional (surgery, catheterization) or medical therapy — or sometimes both — for each affected vein.
Your child’s care team will be led by a pediatric cardiologist and pediatric cardiac nurse practitioner. We often integrate care from Boston Children’s specialties such as pulmonary hypertension, gastroenterology, and nutrition into your child’s treatment plan. We also consider you and your child to be integral parts of the care team. You and your team will work together to customize a care plan that’s best for your child.
