First-hand experiences

Read these first-hand experiences from parents and family. What is it like to go home with a feeding tube? To take a baby home on oxygen? To be a CDHer grandparent?

What is it like to be an adult CDH survivor and have a baby of your own


By Erin, CDH survivor and new mum.

  • Erin’s left-hand-side CDH was diagnosed at her mother’s 20-week ultrasound scan in 1993. She was born in 1993 in Melbourne and has since had 5 surgeries to repair the hole in her diaphragm. In 2022, Erin welcomed a baby of her own. Erin shares her CDH journey in this Q&A.

What it is like to have your CDH baby go home with a nastrogastric tube and on oxygen?


By Honor, mum to CDH survivor Audrey.

  • Audrey was discharged from hospital with a feeding/natrogastric (NG) tube and on oxygen. Honor describes the experience of bringing home your baby when they require feeding and breathing assistance.

What it is like to be a CDHer grandparent?


By Lisa Ferguson, mum to Caitlin Ferguson, and grandmother to CDH survivor Hurley.

  • Lisa shares her experience of learning her daughter and son-in-law received a CDH diagnosis for one of their unborn twins.

What is it like to have a baby where CDH is diagnosed post birth (not detected during pregnancy)?


By Ebony Mattschoss, mum to CDH survivor, Harrison.

  • Ebony shares her experience of learning her child had CDH post-birth.