Pulmonary Vein Stenosis Program

About the Pulmonary Vein Stenosis Program

We founded the Pulmonary Vein Stenosis Program in 2019 to learn more about the condition and how to improve the lives of people living with pulmonary vein stenosis (PVS). Pulmonary vein stenosis is a rare and complex disease that can create complications for the heart and lungs, as well as other organs. Our PVS Program brings together experts from across different specialties so we can treat the heart in addition to other systems in the body.

Our multidisciplinary approach has improved our process for early diagnosis and early intervention for children, which are both integral to providing the best treatment for this rare disease. Aided by our research, we are now developing novel treatments to manage PVS and help our patients live longer, healthier.

The Pulmonary Vein Stenosis Program includes:

• Screening for early diagnosis, especially in children born prematurely
• Streamlined treatment with early intervention and regular follow-up visits for all patients with PVS
• Interventional approaches with minimal radiation and contrast imaging
• Innovative intraprocedural imaging techniques for improved outcomes
• Development of medical therapy protocols to improve long-term outcomes, including secondary pulmonary hypertension management
• A multidisciplinary approach to patient evaluations, management and follow-up planning that involves specialists from interventional cardiology, pulmonology, cardiac anesthesia, ENT, cardiac intensive care unit, clinical pharmacology, radiology and cardiothoracic surgery

Monthly program meetings

Our team of experts from many different specialties meets monthly to collaborate on how to provide the highest quality care. These meetings include discussions on:

• Patients with recent procedures
• New patients or patients with upcoming procedures
• Referrals
• Protocols and practice changes
• Morbidity and mortality
• PVS research (updates and new projects)

Quarterly parent support group

We know the challenges of having a child with pulmonary vein stenosis. As parents or guardians, you support them any way you can. Now, we’re here to support you and more importantly, provide a place where parents can support each other.

This support group is facilitated by our wellness team, Chelsie Lawson, LSW, and Sarah Kelly, PsyD, in collaboration with the medical team, Jenny Zablah, MD, and Paige Sheaks, PA-C. This quarterly meeting provides an environment where parents can talk through experiences and support each other in a comfortable setting. It also helps us identify the best way to offer guidance and support in navigating life with a child with this condition. The structure of the group is comprised of both facilitated discussion time as well as medical and research presentations to keep parents updated with the ever-evolving management of this rare disease.

Why visit the Pulmonary Vein Stenosis Program

PVS is a challenging disease that more commonly affects those with congenital heart disease and premature babies. Our understanding of this has led to the development of new ways of detecting PVS and more effective intervention for children who have PVS. Through our work at Children’s Colorado, we are learning more about diagnosing and treating this condition every day.

Innovation and progress

Premature babies are at higher risk of developing PVS, making early detection critical. Our Program has helped raise awareness about the importance of performing echocardiograms in the NICU to identify the signs of PVS to provide early intervention. We are also the first center to use optical coherence tomography (OCT) to diagnose children with PVS, which allows us to see high-definition images of the pulmonary.

Collaboration for better outcomes everywhere

We work extensively with the PVS Network, a collaborative community dedicated to advancing research and clinical care for children with pulmonary vein stenosis. By contributing research and speaking at conferences organized by the PVS Network, we are helping drive the development of the best PVS care.

Who we treat at the Pulmonary Vein Stenosis Program

We welcome people with PVS up to age 21 and their families.

Contact the Pulmonary Vein Stenosis Program

For more information on the Pulmonary Vein Stenosis Program, please contact us at 720-777-3379.

Research

Read some of our recent research publications:

Technical Feasibility on the Use of Optical Coherence Tomography in the Evaluation of Pediatric Pulmonary Venous Stenosis

Computed tomographic parenchymal lung findings in premature infants with pulmonary vein stenosis