Postnatal 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. A test called pulse oximetry can screen newborn babies for CHD postnatally or after birth. Some babies may have very low blood pressure shortly after birth or heart conditions that cause breathing difficulties and may affect their growth and development.

Questions to consider asking your child’s care team if your infant is diagnosed with a CHD:

• Can you explain my child’s congenital heart disease diagnosis? 
  Congenital heart disease is a range of structural problems arising from abnormal formation of the heart or major blood vessels. At least 18 distinct types of congenital heart defects are recognized, with many additional anatomic variations.
  
  
• Does my baby need to have a heart operation? 
  Not everyone with a CHD requires surgery. Some babies may only need to visit a pediatric cardiologist and stay under observation. In other cases, surgery or other procedures may be needed to reduce the effects of the heart defect, or to repair the defect.
  
  
• 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.
  
  
• 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.

View: Postnatal CHD Diagnosis Questions You Could Ask Your Doctor (PDF)