The French Rare Disease Reference Center for congenital diaphragmatic hernia (CDH) was created in 2008, to implement a national protocol for foetuses and children with this serious condition. Neonatal mortality from CDH is 30-40%, mainly due to pulmonary hypoplasia and persistent pulmonary hypertension, and half of those who live have high respiratory, nutritional and digestive morbidity. CDH management requires long-term and specialised multidisciplinary care. It has been well established that a standardised management protocol improves the prognosis of children with CDH.
Conclusion: Organising health care and implementing a nationwide French protocol were key factors for reducing mortality and morbidity from CDH.
Keywords: Congenital diaphragmatic hernia; Mortality; National protocol; Persistent pulmonary hypertension; Pulmonary hypoplasia.
©2017 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.