What happens after diagnosis?

Educational, not medical advice. If you have an urgent concern, call your physician or 911.

Module 1 — Starting the Journey · Episode 3

A CDH diagnosis sets several things in motion. Knowing the usual sequence can make the weeks ahead feel less uncertain.

Referral to a fetal center

Most families are referred to a fetal care center with experience in CDH. There, a team across maternal-fetal medicine, pediatric surgery, neonatology, cardiology, and radiology evaluates the pregnancy together rather than in separate silos.

A fuller evaluation

Expect detailed imaging, including fetal MRI and a fetal echocardiogram, and a discussion of whether genetic testing is right for you. This builds the severity picture described in the previous episode.

A counseling conversation

The team will walk you through what the findings mean, what to expect at birth, and whether a before-birth option such as FETO might apply. This is the time to ask questions and to bring someone with you.

Planning the delivery

Babies with CDH are best delivered at a center with a high-level NICU, pediatric surgery, and ECMO capability, with the team prepared in advance. Much of this planning exists so the right people are in the room the moment your baby arrives.

Support for you

A diagnosis like this is hard. Ask about counseling, social work, and peer support, including families who have been through CDH. Caring for yourself is part of caring for your baby.

Next in Module 1: Questions to ask any fetal center · Back to Module 1