Congenital Diaphragmatic Hernia (CDH)

Children with CDH can experience breathing difficulties, fast heart rhythm, cyanosis (blue skin color), and abnormal chest development.  

Already 16 weeks into pregnancy, CDH can be discovered via ultrasound. Most children with CDH are diagnosed during pregnancy or at birth. When CDH is suspected, the mother is referred to our Center for Fetal Medicine (CFM) for a definitive prenatal diagnosis, and parents are offered prenatal counseling by our team. They are also offered a counselor who will follow them throughout the entire hospital stay, from their child’s birth to discharge. Delivery by cesarean section is planned for two to three weeks prior to the due date.  
 
In exceptional cases, the condition is diagnosed in older children. The diaphragmatic hernia for these children has had a less negative impact on their lung function, and, as a result, they have a very good prognosis.  

Surgery is generally performed during the child’s first week of life. The organs are re-positioned in the abdominal cavity, and the diaphragmatic defect is closed. The duration of ventilator support and prognosis depends on the development of the lungs. The rates of mortality and symptoms are high, with symptoms commonly continuing throughout childhood. In most children, symptoms diminish in adulthood. 
 
Since 2018, treatment and follow-up of children with CDH have been part of Sweden's national highly specialized pediatric surgery care and surgery is performed only at Karolinska and Skåne University Hospital. Centralization of care results in increased knowledge, quality, and patient safety. Children with CDH are followed up regularly until the age of 15 by a multidisciplinary team at our hospital consisting of pediatric surgeons, pediatric pulmonologists, dieticians, and specialist nurses.