Some of you might remember my son was diagnosed in-utero with Agenesis of Corpus Callosum - he is just shy of 3 months and is doing really well. I am clearing out some notes and came across my list of questions to ask at our meeting with the fetal health team that I thought might be worth sharing for people facing prenatal diagnoses. I am trying not to include anything too specific to his diagnosis,, but we did know there was a problem with his brain before the meeting (we thought hydrocephalus at the time).

Feel free to chime in if you have anything to add.

What can we expect labor/delivery to be like? Will he need intervention right after birth? Is a vaginal birth still advisable? Do you forsee NICU time? Are we ok to still deliver @ out hospital (what level of NICU?) w/ my current doctor?

Is his condition currently stable? What followup care will I need during this pregnancy for this condition? Is there anything I should be on the lookout for? What would indicate a problem that needs reporting and who would I be reporting it to?

What activities should I be doing or avoiding at this time? Is there a point in which it is safer for baby to come out than be in? Is there anything I need to avoid during labor (drugs, etc)?

What treatment options are available? When would they begin? Does early diagnosis/treatment change outcome?

What does the follow-up care look like? What tests will be done and when will they be done?

What can we expect for his quality of life? What sort of appointment schedule will he be on? What doctors would he need to see regularly?

What therapies/services do you anticipate he will need in childhood and beyond? What delays should we expect or be on the lookout for?

What therapies/services do you anticipate he will need in childhood and beyond? What delays should we expect or be on the lookout for?

Who will be coordinating his care among the multiple clinics he will be a patient of?