In 1996, CHERUBS created the first Parent Reference Guide for Congenital Diaphragmatic Hernia. It has undergone several incarnations and the latest edition will go public in the Spring of 2019 with input of a full medical advisory board and 1000’s of patient parents.
Until it is released, our current edition is currently still available at http://www.cherubs-cdh.org/images/pdf/cdh-parent-reference-guide.pdf