After hearing that Maya had a congenital heart defect, the searching for answers began! We got paired up with a wonderful cardiologist at Children’s Hospital of Wisconsin where we got answers to our most pressing questions. Throughout my pregnancy, there were many more questions after every fetal echo and I have tried to distill them into one list so if anyone else is going through this process this list might help give you a starting point.
Questions to help guide your discussion:
- How many cases like this have you seen?
- What is the survival rate?
- When would she/he need surgery?
- On average how long does this surgery take?
- Average length of recovery time in the hospital?
- Is there anything you saw that would make you think she/he would need surgery immediately after she/he is born?
- Would she/he need any follow up interventions or surgeries later in life?
- What is the quality of life once the defect is corrected? Anything we need to be cautious of as she/he grows?
- What are the next steps?
- What can I do to help support the growth and health of the baby in utero?
- Where can I find more information about this defect?
- And of course, ask your doctor to explain what the heart defect is and how surgery will fix it.
We went over Maya’s CHD nearly every appointment. The first appointment or two was so overwhelming and we learned more each time it was explained to us. We asked our wonderful cardiologist to draw it out, explain it, and teach us everything we needed to know so when we needed to explain it to family and friends, we would be able to.
Prenatal appointments were where we started to really become advocates for our daughter’s health. Thankfully we didn’t have to push or fight for care because at the Herma Heart Institute, we were always given the very best care but unfortunately that isn’t always the case. So I hope this list of questions helps guide you and gives you a sense of preparedness heading into some difficult and life changing appointments.
If you would like the list of questions emailed to you, let me know by reaching out here (at the bottom of the page.) 
