Children’s Hospital of Philadelphia is one of the only institutions studying the neurodevelopmental and other long-term outcomes of patients with diagnoses that cause pulmonary hypoplasia. Following children from birth throughout childhood ensures optimal outcomes and helps us to gain a better understanding of how this condition affects children over the long term.

The Pulmonary Hypoplasia Program (PHP) is designed to both utilize clinical data for research and to quickly and seamlessly integrate the expanded knowledge resulting from that research into improved care for children.

What we study

The PHP maintains a database of over 885 patients who have received or are currently receiving follow-up care. We have established a baseline for how these children do following treatment, and the program has already begun to yield insights that improve understanding of pulmonary hypoplasia and overall care. Our research has enabled the creation of clinical standards for treating pulmonary hypoplasia, better serving families.

The PHP study aims first to identify trends of outcomes for children with the various diagnoses leading to pulmonary hypoplasia. That information enables more extensive and useful counseling for parents who have just received a diagnosis for their child, and helps the team to identify topics for future research in areas that outcomes are less than optimal.

For more than two decades, researchers at Children's Hospital of Philadelphia have helped define the long-term outcomes of children born with congenital diaphragmatic hernia (CDH), giant omphalocele, and complex congenital lung lesions.

Research led by Dr. Holly Hedrick and colleagues has shown that survivors of these conditions are at increased risk for developmental, cognitive, motor, learning, behavioral, respiratory, and nutritional challenges that may emerge or evolve throughout childhood and adolescence.

These findings have highlighted the importance of comprehensive, multidisciplinary long-term follow-up to identify concerns early, provide timely interventions, and optimize lifelong health and quality of life.