Prenatal CHD Diagnosis Questions to Ask Your Doctor

Congenital heart disease (CHD) is a range of conditions present at birth and can affect the structure of a baby's heart and the way it works. CHD may be diagnosed prenatally or before birth. A physician can typically check a baby’s heart around 18-22 weeks of pregnancy using a scan called a fetal echocardiogram. If they are able to view all four chambers of the heart, or lack thereof, an early diagnosis of CHD may be possible.

Questions to ask your child’s care team if you receive a prenatal CHD diagnosis:

  • My fetal echocardiogram found something abnormal. What happens next?
    When a heart defect is found the mother may be referred to a pediatric cardiologist who will explain the diagnosis and implications as soon as the study is completed. This discussion will often include a treatment plan.

  • Will my baby need medical intervention or surgery after birth? 
    If necessary, medical intervention can improve the chance of survival after delivery for babies with serious heart defects. Pediatric cardiologists can determine the seriousness of the heart defect and what to expect.

  • How can I prepare myself and my child for surgery and the possibility of a prolonged hospital stay?
    Your child's cardiac surgical team will give you information to help prepare for surgery and hospital stay. Often there are nurses, child life specialists, social workers, or psychologists who are specially trained and available to answer your questions. You can ask about support for your baby as well as emotional support for yourself.

  • What can I do to protect my baby’s heart health during the rest of my pregnancy?
    What’s good for mom is good for baby. When women take care of their cardiovascular health by doing things like eating a nutritious diet, staying active, managing their blood pressure and cholesterol levels, and not smoking or vaping their babies get their best start at life.

  • What type of ongoing medical care may my child need due to their CHD?
    Most children with CHD need periodic heart checkups after their diagnosis or surgery. For more minor CHD conditions, checkups should be guided by your child’s cardiac care team. Depending on your child's condition, periodic testing may be needed.

  • If my child needs surgery what type of equipment or resources might they need once we return home from the hospital?
    Some children, especially those with complex CHDs, may need special equipment, devices or resources to help with their recovery or quality of care after birth or after surgery. Ask your child’s care team about what you need at home to keep your child healthy and safe.

  • Is there someone on the team I can talk to about how I’m feeling? Is there someone who can provide emotional support for me and my family?
    Receiving a CHD diagnosis can be traumatic. It’s important for parents to care for their overall well-being and your child’s care team can help refer you to resources for support.
Prenatal CHD Diagnosis Questions to Ask Your Doctor 

Download: Prenatal CHD Diagnosis Questions You Could Ask Your Doctor (PDF)

Jackson at AHA event wearing red cape

Jamie and Jackson's CHD Story

Jamie found out 18 weeks into her pregnancy that her son Jackson had not one but four heart anomalies.