Congenital Diaphragmatic Hernia: A World Leader in Research and Care

Children's Hospital of Philadelphia (CHOP) cares for more babies born with congenital diaphragmatic hernia (CDH) than any hospital in the world. This experience allows us to better understand and treat this complex condition, and translate what we learn into breakthroughs in care. Watch the video to learn about the advances pioneered by CHOP since 1995, how we continue to push CDH care to new frontiers and improve the life course for children, and the role of continued CDH research that has us on the cusp of revolutionary advances. 


Congenital Diaphragmatic Hernia: A World Leader in Research and Care

Holly L. Hedrick, MD: Imagine finding out when you're pregnant that your child will be born with a life-threatening condition. A birth defect so severe that their abdominal organs move into their chest, threatening growth of the lungs. When they're born, they will struggle to breathe. Over the past three decades, Children's Hospital of Philadelphia has established the largest program in the world to treat that condition, known as congenital diaphragmatic hernia or CDH.

We see many patients with CDH and what we learn allows us to make breakthroughs. These children may require expert follow-up care for years to manage pulmonary hypoplasia, also known as small lungs, and other health issues. Our Pulmonary Hypoplasia Program, created in 2004, follows children with CDH into adolescence.

More than 1000 patients from around the world are enrolled. We see it as our responsibility to monitor our patients and optimize their care, and we learn a great deal from following their life course. Our dedicated CDH team has spent nearly three decades translating our findings into advances that have pushed care to new frontiers.

Advances like pioneering fetal imaging that helps us predict CDH severity, and monitor the condition, prenatally. Advances like building the world's first special delivery unit in a free-standing children's hospital, which gives babies immediate access to an expert neonatal team. Advances like developing highly technical and life-saving interventions for babies who will struggle to breathe during and afterbirth.

Advances like becoming experts in ECMO, a life-saving form of heart-lung bypass for infants with severe cardio-respiratory failure. And finally, and most importantly, creating a fetal psychosocial team that surrounds families with support services throughout their journey with us. While great strides have been made, there is still so much more work to be done. Inspired by our patients and their families, who we care so much about, and supported by generous donors, we have built the most robust CDH research program in the world. Our researchers continue to study the molecular and genetic factors that cause CDH, and we are on the cusp of revolutionary advances, from a more effective and safer form of ECMO, to a new way of ventilating babies that is less harmful to their lungs.

Amazing things are on the horizon and as we continue to care for babies with CDH, we will continue to learn and continue to improve the future for children and families.

Topics Covered: Congenital Diaphragmatic Hernia (CDH)

Related Centers and Programs: Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment, Garbose Family Special Delivery Unit

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