**11. Follow-up and outcomes**

A multidisciplinary approach is needed for the comprehensive long term follow up of the neonates with CDH. A myriad of significant morbidities may affect these neonates, which includes respiratory disorders (chronic lung disease, pulmonary

hypertension, obstructive pulmonary disease, reduced exercise capacity, recurrent pulmonary infection), gastroesophageal reflux, nutritional derangements, neurodevelopmental delays, hernia recurrence, hearing deficits and orthopedic deformities [196, 197]. The Health-related Quality of Life (HRQoL) has been reported to improve as the survivors grow older, while it may be variably compromised during the childhood [198–201]. A single-center prospective study evaluated a cohort of 32 CDH survivors at the mean age of 8 ± 4 years and recorded that about 62% of them needed medical equipment, 18% home health services and 28% special education [199]. The HRQoL in the survivors did not differ from that of healthy children, although it was diminished among those who required special education. The study concluded that even though many CDH survivors continue to require home medical equipment and home health services at school age, most have normal parentreported HRQoL, and that the need for special education and the higher family impact of neonatal CDH lead to decreased HRQoL.

The guidelines for the follow-up of CDH survivors have been outlined by the American Academy of Pediatrics and are available [196]. A review of current follow up practices in CDH EURO consortium centers revealed that even though 15 out of 19 centers had structured and standardized follow up program for the CDH patients, the annual follow up until 16 years of age was not done in any of the participating centers [197]. The study group proposed the implementation of standardized follow-up of CDH patients for extended evaluation of the survivors for their long term outcomes [197].
