Newly Diagnosed Resources

Receiving a prenatal congenital heart defect (CHD) diagnosis is overwhelming. It is completely normal to feel scared, confused, and unsure of what to ask. Please take a deep breath. You are not alone.

Your Baby’s Heart: Questions for Your Fetal 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.

Download The Checklist

    1. What is the exact medical name of my baby’s heart defect? (Can you spell it for me?)

    2. Can you draw a picture or show me a diagram of what my baby's heart looks like compared to a typical heart?

    3. How severe is this defect based on what you can see today?

    4. Will this defect affect how my baby grows while in the womb?

    5. Are there other genetic tests or scans (like an amniocentesis) that you recommend we do to get more information?

    1. How often will I need to come in for fetal echocardiograms or high-risk ultrasounds for the rest of my pregnancy?

    2. Will this diagnosis change my obstetrician (OBGYN) care, or will my regular OB still manage my pregnancy?

    3. Are there any restrictions on my daily activity or work?

    1. Where is the safest place for me to deliver my baby? (Do I need to deliver at a hospital with a specialized Cardiac Intensive Care Unit?)

    2. Does this heart defect mean I have to have a C-section, or is a vaginal delivery still safe for the baby?

    3. Who will be in the delivery room with us when the baby is born? (e.g., Neonatologists, cardiac nurses?)

    4. If I have to deliver at a different hospital, will my baby need to be transported immediately? Can my partner go with them?

    1. Will I be able to hold my baby immediately after birth, or will they need to be whisked away for medical care?

    2. Will my baby need any immediate medications (like Prostaglandins) or a breathing tube right after they are born?

    3. Where will my baby go after birth (NICU or PCICU), and how soon can we see them?

    4. Will I be able to breastfeed, or should I plan to pump and provide milk through a feeding tube?

    1. Will my baby need heart surgery? If so, when does the first surgery usually happen (days, weeks, or months old)?

    2. How many surgeries are typically required for this specific diagnosis?

    3. Who will be my baby's pediatric cardiologist and surgeon after they are born? Can we meet them before delivery?

    4. What is the typical hospital stay timeline for a baby with this diagnosis?

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.