Questions to ask your care team

Getting a prenatal lung malformation diagnosis like CPAM/CCAM can be really overwhelming. Along with learning about a rare condition you’ve probably never come across before, you likely have a ton of questions about what this diagnosis means for you, your baby, and this pregnancy. We’ve put together a list of things you might consider asking your care team.

• What is the starting CVR and/or measurements?

• Where is the lung malformation located? Is more than one lobe affected?

• What can you tell me about its appearance?

• Is it solid, microcystic or macrocystic?

• Is there evidence of a feeding vessel?

• Is there mediastinal shift (heart pushed to the other side of the chest)?

• Is there any evidence of hydrops?

• Is there evidence of polyhydramnios?

Want to understand your diagnosis?

Our diagnosis guides are written for families and give an overview of the causes, prognosis, management and treatment of CLMs.

• How often will I come in for ultrasounds?

• How will this change if the lung malformation changes/grows bigger?

• Do you recommend I get a fetal MRI?

• Can I have a consultation with a surgeon?

• Can I have a consultation with a neonatologist?

• Have you treated lung malformations before?

• Who will be overseeing my case? Who is in charge of my care?

• What is the standard course of management and treatment at this hospital for lung malformations?

• What interventions, if any, will you offer if the lung malformation (the CVR number) gets bigger?

• Can I receive all testing and treatment here or will I need to go to a specialist hospital?

• How will this affect my birth plan?

• What will happen at birth if my baby is symptomatic?

• Who will be present at the birth? NICU? Surgery?

• Will my baby need to spend time in the NICU?

• Can I tour the NICU before birth?

• From prenatal imaging do you recommend surgery for my baby?

• What are the pros and cons of surgery for my case?

• When would surgery happen?

• Can I pick the surgeon? How are surgeons allocated?

• (If a teaching hospital) will residents or fellows be allowed in the operating room? If so, what will their role be?