Work in progress. This guide is being written and reviewed.
Questions to ask any fetal center
Educational, not medical advice. These are a starting point for conversations with your own care team. If you have an urgent concern, call your physician or 911.
Module 1 — Starting the Journey · Episode 4
You do not need to ask all of these, and you should add your own. Bringing a written list, and writing down the answers, helps on days when there is a lot to take in.
About the diagnosis
- Is the CDH on the left, the right, or both sides?
- What did the fetal MRI show for lung volume (O/E-TFLV) and liver position (%LH)?
- Are there other findings, including with the heart, and was genetic testing offered?
- In plain terms, how severe is this expected to be?
About options before birth
- Is my baby a candidate for FETO, and why or why not?
- What would the benefits and risks be for us specifically?
About delivery and the NICU
- Where do you recommend I deliver, and who will be in the room?
- What breathing support might my baby need, and how is pulmonary hypertension managed?
- Is ECMO a possibility, and how would that decision be made?
- When and how would surgery happen, and might a patch be needed?
About the center itself
- How many CDH babies do you care for each year?
- What are your outcomes, and how do you support families long term?
About the bigger picture
- What does recovery usually look like, and how long?
- What long-term follow-up should we expect, and who is our point of contact?
Back to Module 1 or the family hub