Clinical outcome at 1 year of age for congenital diaphragmatic hernia in the era of fetal intervention

Aim: To document clinical outcome of congenital diaphragmatic hernia (CDH) at 1 year including fetoscopic endoluminal tracheal occlusion (FETO) treated infants in relation to antenatal and postnatal variables. Methods: Single centre prospective clinical follow up including cardiac ultrasound and a standardized respiratory questionnaire. Results: Thirty-four survivors of a high risk population were included (FETO n=10). At 1 year median weight z- score was -1.50 (IQR -2.45;-0.88) and 10/34 infants had failure to thrive (FTT). Feeding problems at 1 year (17/34) were mainly related to gastro-oesophageal reflux with a high need for tube feeding in the first year (9/34). Tachypnea was present in 10/29 (34%) patients and a quarter of the infants were on chronic inhaled medication. The number of neonatal ventilation days correlated with the total respiratory symptom scores (p=0.048). Hospital readmission occurred in 19/34 infants (56%), in almost half (8/19) for a respiratory reason. Conclusion: In this cohort of high risk CDH infants, morbidity at one year is mainly determined by gastro-intestinal problems and FTT. The respiratory questionnaire may underestimate respiratory morbidity since high rate of persistent tachypnea were found together with chronic inhalation therapy in around 25% of children.