Guided Questions for your Cardiac Center

One of the hardest pills to swallow is, “There’s something wrong with your baby’s heart.” But for us, there was a second pill, feeling like you didn’t make the right decision when advocating for your baby’s health.  We never thought to get a second opinion because of the relationship we’d built with our Prenatal Cardiologist.  I wish I knew to ask these questions prior to finalizing the birthing center for Justice.  

We started at Wake Forest Baptist and advocated for a second opinion to transfer to Levine’s Children’s Hospital.  After an extended, tedious, mentally draining 26 day stay at the hospital, we finally brought our baby girl home to thrive.  We are so grateful God provided provision and confirmation to my husband’s discernment.  

Thanks to @ConqueringCHD for the following questions designed to help when you talk with the care team.  Share this post because you never know who’s connected to you to needs this information.

1.  How many procedures do you perform each year?  How often have you and your program performed this procedure or ones like it in the last year?  In the previous four years? 

2.  What is the survival rate for this type of procedure at the time of hospital discharge?  After one year?  How do your results compare to other centers’ results? 

3.  What are the most likely complications or things that can go wrong with this procedure, and how often do they happen within one year of this procedure? 

4.  Do you share your results with national data programs such as the STS Database or Impact Registry to help improve care?  Is this information open to the public? 

5.  Do your surgeons have special training in congenital heart surgery?  What other types of special training do your doctors and nurses have? 

6.  How are family members included in the decision-making process?  How will the care team give me information, or reports, before, during, and after the procedure?

7.  How many days do you think my child will be in the hospital, both before and after the procedure? 

8.  What are my options for when, where, and how to deliver my baby?  How do you work with my OB/GYN/Midwife to prepare for delivery and care directly before and after delivery?  

9.  How do you work with my baby’s doctor after birth and after the procedure?  

10.  If my baby needs to stay in the hospital after delivery to prepare for a procedure, where will s/he be?  What about after the procedure?  Do you have a cardiac intensive care unit (CICU) that cares mainly for children with heart defects?  

11.  Will I get to hold my baby before or after the procedure?  If so, when and how?  

12.  Will I be able to breastfeed my baby after delivery and again after the operation?  Will my baby require a special diet?  Should I expect my baby to take a bottle or breastfeed without problems?  

13.  What do you do to help prepare parents to take their babies home from the hospital?  

14.  What support is available for my family and me?  For example, can I talk to other families with children with heart defects?  Do you provide financial, nutritional, and mental health support?  

15.  What are the expected long-term results for this heart defect and its procedure?  What is my child’s life expectancy, or how long is my child expected to live?  Are there other possible life-long problems that I need to watch out for?  

16.  Thinking about how my child will grow and develop, what should I expect from them as a preschooler, school-age child, teenager, and adult?  

17.  As my child gets older, does your medical care plan to transition from pediatric to adult care?

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