A Life Raft: A Parent’s Experience using the Guided Questions Tool

The Guided Questions tool (in PDF) was designed to help parents promote discussion with their cardiac care team. At the Conquering CHD (CCHD), we believe that information is important when making decisions about the care of your child. The tool is broken into three key aspects of care: quality data, patient experience and looking ahead. Esther Kinney shares her own experience using the Guided Questions during pregnancy, after her daughter was diagnosed with CHD.

How did you learn about the Guided Questions tool?

I learned about the Guided Questions tool during my first telephone conversation with Amy Basken, co-founder of CCHD. I was a desperate emotional wreck. I still remember the relief I felt when she described the pamphlet.

Why did you decide to use the tool?

After learning of my daughter’s heart condition, I felt completely lost and overwhelmed. My world was rocked to find out that my daughter Sophia would need open heart surgery immediately after birth. I knew that I didn’t have the necessary knowledge to manage all of the decisions. I had to ensure she received the best possible care, but wasn’t sure where to start. When Amy mentioned the Guided Questions, I felt as if I was handed a life raft. And it was. It would be one of the most important resources for selecting the best location for my daughter’s care.

When using the Guided Questions, did you bring in the actual pamphlet or prepare a list of questions on your own?

I printed the brochure and kept it in the front of my “Sophia binder”. I brought the questions with me to the appointments, read them verbatim, and took the time to write down the answers.

Which questions were the most helpful to you and why?

How many procedures do you perform each year? | How many times have you and your program performed this procedure or ones like it in the last year? Over the last 4 years? | 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?

The responses I received from facilities differed significantly. I think I had the expectation that this type of specialty care would have similar outcomes no matter which hospital you go to, but I was very wrong.

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? | 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?

In my experience, there are hospitals that focus on things they are good at and sweep their areas of deficiency under the rug. Unless questions are asked directly and consistently, it is difficult to compare the answers.

Did the tool help you discover new questions that you hadn’t thought of?

Yes! I was an emotional wreck. I had no idea to ask if there was a dedicated CICU.

How did the questions impact your confidence in talking to your care team?

It gave me a voice. It empowered me by helping me feel competent.

Tell us about the reaction from your doctors when you asked the questions from this tool.

One of the providers shrugged off the necessity of such a tool and completely disregarded some of the questions. He told me that I shouldn’t go through life focusing on all the things that could go wrong. He said that any one of us could walk across the street and get killed by a car. I wanted to ask him if he realized we were talking about the health and well-being of my precious child.

Another team of providers took each question seriously. They provided thorough answers. They went above and beyond to make me feel as comfortable as possible, while providing a realistic prognosis and expressing genuine concern for the well-being of my daughter.

What impact did the tool have in your own knowledge and in your child’s care?

As a nurse, I understand basic medical terminology. However, I haven’t worked on a general cardiac unit, and neonatal open heart surgery is even more complex. This tool gave me the correct language to use. It identified the expectations that were appropriate. For example, it is okay to expect that the hospital has a dedicated CICU, with specialized CICU nurses. It is okay to expect that hospitals are transparent with their statistical outcomes. It is always okay to seek a second opinion.

As a mother, I often second-guess many of the parenting decisions I make. Using that tool and going to the hospital that respected my need for information are two decisions I have never regretted.

Would you tell others to use these questions and why?

Yes! I share the Guided Questions brochure all the time. I will always be a heart mom. Amy will always be a heart mom. She handed me a gift when she told me about these questions. I want to pay it forward and pass that gift along as often as I can.