Postnatal CHD Diagnosis Questions to Ask Your Doctor

Congenital heart disease (CHD) refers to conditions present at birth that affect the structure or function of the heart or major blood vessels and can influence a child’s health over time. Pulse oximetry screening can help identify some forms of critical CHD in newborns, although it does not detect every heart defect. Some babies with CHD may develop symptoms shortly after birth, such as low oxygen levels, breathing problems, poor feeding or low blood pressure. Some forms of CHD can affect a child’s growth, feeding, activity level and development over time.

Questions to ask your child’s care team if your baby is diagnosed with CHD:

• Can you explain my child’s congenital heart disease diagnosis? 
  CHD refers to a range of conditions affecting how the heart or major blood vessels form before birth. There are many different types of CHD, ranging from mild to complex.
  
  
• Does my baby need to have a heart operation? 
  Not all babies with CHD need surgery. Some only need regular checkups with a pediatric cardiologist. Others may need surgery or catheter-based procedures to repair, improve or help manage the heart condition.
  
  
• How can I prepare myself and my child for surgery and the possibility of a long hospital stay?
  Your child’s cardiac surgical team will give you information to help prepare for surgery and a hospital stay. Often, a care team will be available to answer your questions. You can ask about support for your baby and emotional support for yourself.
  
  
• If my child needs surgery, what type of equipment or resources might they need once we go home?
  Some children, especially those with complex CHD, may need special equipment, devices or resources to support recovery and ongoing care after surgery or a hospital stay. This may include feeding support, medications, pulse oximetry monitoring or home nursing services. 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 give emotional support to my family and me?
  Receiving a CHD diagnosis can feel overwhelming and stressful. It’s important for parents to care for their overall well-being. Your child’s care team can help refer you to support resources. You may also ask about social workers, mental health professionals, parent mentors or support groups.

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