09/03/2025
My child is ready to be discharged from the NICU to home… what should I know?
You made it through all the ups and downs of prenatal care, delivery, life in the NICU (maybe even ECMO), and now your medical team is telling you that you are close to being discharged home! You are overjoyed… wait, nervous… excited… scared… asking yourself, “what will I do if…”
Preparing for discharge is an exciting time and the specifics depend on many factors: How severe was my child? A patient with an A defect is different than a patient with a D defect. Is my child on oxygen? Does my child have a G-tube? Maybe a tracheostomy? How far away do I live from the hospital (and care team) I now trust? What do my resources look like when I return home?
Managing medical complexity: Takes a team and good education to successfully navigate oxygen, a G-tube, a tracheostomy, or other medical complexities at home. Get educated. Feel comfortable. Have a backup Gtube.
1. Find a pediatrician that you trust. They don't have to be an expert in CDH.
2. Knowing who to call and who I will follow-up with – you need to have a clear idea about who to reach out to… Pediatrician? Surgeon? Pulmonologist? It’s best to have a specialized CDH clinic!
3. 75% of all CDH patients will be back in the ER and/or readmitted for care in the first year of life! Make sure you know the signs and symptoms of a CDH recurrence AND a bowel obstruction.
It is important that your care team reassure you that they are prepared to help you with this next phase. This is what you have been waiting for! What other questions do you have about discharge? Let us know!