Questions to ask your clinical care team

We are here to help you find clear, trustworthy information. We believe reliable information leads to real hope, even in hopeless situations.

An organized approach to gathering information is the best place to start coping with news of a fetal anomaly.

Here is one set of helpful questions you might bring to appointments. We’ve made a one-pager for you, so please download this free resource to take with you.

Share it with your partner, family member, or friend ahead of time, especially if they are supporting you at an upcoming appointment.

Questions:

Note: please reach out for a PDF handout to take to appointments

What is the anomaly, and is there a known cause?
Is this anomaly isolated, or part of a syndrome or genetic condition with additional perhaps unseen or functional issues?
What testing do you recommend (genetic tests, imaging)? What risks do they carry?
What are the possible treatment options to be aware of? Where are these located?
What are the known outcomes for baby (best case, worst case, most likely)?
Is there a range in severity for this fetal anomaly? When and how will I know our level of severity?
How often will pregnancy monitoring be required, and what will that look like?
What medical or surgical interventions are possible before birth, at birth, or afterwards?
What should I expect in terms of my baby’s quality of life and development?
What does life look like for my baby immediately post-birth? In the first 1-2 years? Beyond?
Are there certain centers of care that are known for their ability to care for babies like ours, with this specific fetal anomaly?
Where should I deliver (which hospital) to maximize safety and access to care?
When (at what number of weeks) will you likely recommend delivery for our baby?
What support services are available (mental health care, genetic counseling, palliative care)? Do any depend on being an in-state patient?
What questions am I not asking, that I should be asking?
What resources do you suggest or can you provide that I can look at when I get home?