Researchers at Children’s Hospital of Philadelphia (CHOP) found that the level of care administered for infants with congenital diaphragmatic hernia (CDH) – a very severe birth defect where abdominal organs move into the chest – strongly influences survival outcomes, even after adjusting for patient characteristics. The findings were reported in Pediatric Research.
“Our findings show that for a baby with CDH, every detail matters, from prenatal diagnosis to delivery, surgery and long-term care,” said Holly Hedrick, MD, a senior study author and pediatric and fetal surgeon in the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment at CHOP. “That’s why it’s essential to seek a fetal therapy center with extensive experience in managing CDH through every stage of pregnancy and beyond.”
In the study, researchers retrospectively analyzed 3,639 CDH cases from the Children’s Hospital’s Neonatal Consortium (CHNC) database between 2010 and 2022. CHNC is a consortium of level IV NICUs, which provide the highest level of care for critically ill newborns, collaborating to submit patient-level data on each admitted infant to improve the knowledge, safety, quality, and outcomes for these admitted children. This is the first study in North America to demonstrate inter-center variation (ICV) inclusive of CDH patients treated with extracorporeal membrane oxygenation (ECMO), an advanced life support technique used for patients with life-threatening heart and/or lung problems, and non-ECMO.
Researchers found that survival rates, survival without ECMO and the length of hospital stays varied greatly depending on the center. For example, survival rates with ECMO range from 55.4% to 90.7% while survival without ECMO ranged from 38.6% to 87.9%, demonstrating significant variation between centers.
Some hospitals had 18 times higher survival rates, 35 times better chances of avoiding ECMO, and 3.3 times shorter hospital stays than others. These differences suggest that hospital-specific best practices, protocols and expertise play a critical role in determining outcomes for CDH patients.
The researchers noted several key measures that impact the survival of newborns with CDH. Firstly, where a baby is treated matters. High-performing centers with multidisciplinary teams make a significant impact on outcomes. Additionally, predicting outcomes early can help parents and medical teams plan and prepare. Finally, creating these prediction outcomes models and reviewing them helps hospitals evolve and improve care for babies with CDH.
Learn more about CHOP’s approach to CDH.
Guner, et al. “Congenital diaphragmatic hernia outcomes: navigating center-to-center variability in level 4 NICUs in the Children’s Hospital’s Neonatal Consortium.” Pediatr Res. Online February 25, 2025. DOI: 10.1038/s41390-025-03829-0.
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Researchers at Children’s Hospital of Philadelphia (CHOP) found that the level of care administered for infants with congenital diaphragmatic hernia (CDH) – a very severe birth defect where abdominal organs move into the chest – strongly influences survival outcomes, even after adjusting for patient characteristics. The findings were reported in Pediatric Research.
“Our findings show that for a baby with CDH, every detail matters, from prenatal diagnosis to delivery, surgery and long-term care,” said Holly Hedrick, MD, a senior study author and pediatric and fetal surgeon in the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment at CHOP. “That’s why it’s essential to seek a fetal therapy center with extensive experience in managing CDH through every stage of pregnancy and beyond.”
In the study, researchers retrospectively analyzed 3,639 CDH cases from the Children’s Hospital’s Neonatal Consortium (CHNC) database between 2010 and 2022. CHNC is a consortium of level IV NICUs, which provide the highest level of care for critically ill newborns, collaborating to submit patient-level data on each admitted infant to improve the knowledge, safety, quality, and outcomes for these admitted children. This is the first study in North America to demonstrate inter-center variation (ICV) inclusive of CDH patients treated with extracorporeal membrane oxygenation (ECMO), an advanced life support technique used for patients with life-threatening heart and/or lung problems, and non-ECMO.
Researchers found that survival rates, survival without ECMO and the length of hospital stays varied greatly depending on the center. For example, survival rates with ECMO range from 55.4% to 90.7% while survival without ECMO ranged from 38.6% to 87.9%, demonstrating significant variation between centers.
Some hospitals had 18 times higher survival rates, 35 times better chances of avoiding ECMO, and 3.3 times shorter hospital stays than others. These differences suggest that hospital-specific best practices, protocols and expertise play a critical role in determining outcomes for CDH patients.
The researchers noted several key measures that impact the survival of newborns with CDH. Firstly, where a baby is treated matters. High-performing centers with multidisciplinary teams make a significant impact on outcomes. Additionally, predicting outcomes early can help parents and medical teams plan and prepare. Finally, creating these prediction outcomes models and reviewing them helps hospitals evolve and improve care for babies with CDH.
Learn more about CHOP’s approach to CDH.
Guner, et al. “Congenital diaphragmatic hernia outcomes: navigating center-to-center variability in level 4 NICUs in the Children’s Hospital’s Neonatal Consortium.” Pediatr Res. Online February 25, 2025. DOI: 10.1038/s41390-025-03829-0.
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