Newly Diagnosed Resources

Receiving a congenital heart disease (CHD) diagnosis for your child is overwhelming. It is completely normal to freeze up or forget what you wanted to ask when the doctor enters the room.

Partnering with Your Child’s Care Team: Questions for the Cardiologist

A congenital heart defect (CHD) is a structural problem of the heart or major blood vessels present at birth, resulting from improper fetal development. Affecting roughly 1 in 100 newborns, these defects range from minor issues (e.g., small holes) to severe, critical conditions (e.g., missing or poorly formed chambers).

Print this checklist or save it to your phone, and bring it with you to your next cardiology consultation. Remember: You are your child’s best advocate. There is no such thing as a silly question.

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    1. What is the exact medical name of my child’s heart defect? Can you spell it?

    2. Can you draw a picture of my child’s heart or show me on a diagram exactly what and where the defect is?

    3. How does this defect affect the way blood flows through my child’s heart and body?

    4. Is this a condition that could resolve on its own, or will it require intervention?

    5. Are there any other health condition, genetic factors, or developmental issues commonly associated with this defect that we should test for?

    1. What is the immediate treatment plan? (medication, monitoring, procedures)

    2. If surgery is required, when does it need to happen?

    3. How many procedures like this does your surgical team perform each year?

    4. What is the success rate, and what are the most common complications associated with this specific procedure?

    5. Will my child need more than one surgery throughout their childhood or lifetime?

    6. How long should we expect to stay in the hospital after the procedure?

    1. What symptoms or “red flags” should I be watching for at home (e.g., rapid breathing, bluish skin/lips, sweating during feeds)?

    2. If I see these symptoms, should I call your office, go to the nearest ER, or go directly to the children’s hospital?

    3. Will my child need a special diet, a feeding tube, or fortified formula to help them grow?

    4. Are there any restrictions on my child’s daily activities, tummy time, or future participation in sports?

    5. Does my child need preventive antibiotics before going to the dentist to protect their heart from infection?

    1. How often will my child need to be seen by a pediatric cardiologist?

    2. Will my child eventually need a pacemaker, valve replacement, or a heart transplant?

    3. What is the long-term life expectancy and quality of life for children born with this specific defect?

    1. Are there nurses, child life specialists or social workers available at the hospital to help us prepare for our stay?

    2. Can you connect us with a second opinion if we request one?

    3. Is there someone on the team who can provide emotional support or mental health resources for our family?

Kerrington’s Heart Tip:

Use your phone’s voice memo app to record your appointments (with your doctor’s permission!). It allows you to focus on the conversation instead of frantically writing, and you can listen back later to clarify any medical terms you missed.