Supporting Your Child with Congenital Heart Disease: A Guide for Parents

Contributing expert: Jenifer P. Horn, APRN-NP

Heart disease in children can range from the most common to the most complex. Regardless of the diagnosis, it’s difficult to hear your child has a heart problem. The amount of information available on pediatric heart conditions can also be overwhelming. Below our experts provide advice to help you understand and support your child after receiving a diagnosis.

What questions should a parent ask a doctor once their child receives a diagnosis? 

Receiving a diagnosis of congenital heart disease (CHD) is difficult and scary. Our experts in cardiology are prepared to answer all your questions and provide comprehensive care for your family. Conquering CHD, a parent-led national organization and advocacy group, also developed a Guided Questions Tool to help families make more informed care decisions. View a version of the Guided Questions Tool from our experts in Lurie Children’s Heart Center 

What does your child’s diagnosis mean? 

Your education is important to better understand your cardiology team’s recommendations and make the best decisions for your child. Ask your cardiologist to draw a picture of the heart defect and explain the implications of how this impacts the function of the heart, as well as their lifelong cardiac needs. If you have received a diagnosis elsewhere and have questions about the next best steps, we are happy to see you in our Cardiology & Cardiac Surgery Second Opinion Program. 

Will my child need to undergo surgery or a procedure? And if so, when? 

There is a wide variety of CHDs, all with different implications and roadmaps. It is important to understand when, or if, to anticipate interventions so your family can begin to plan ahead. 

How many cardiac procedures do you perform each year? What is the success rate? What complications are possible? Can I meet with the Cardiac Surgeon prior to surgery? How will my child be cared for before, during and after their procedure? 

The best outcomes happen when care is provided in a well-experienced, multidisciplinary team with expertise in congenital heart disease. At Lurie Children’s, every member in the Heart Center – including your child’s nurse, cardiologist, and cardiac surgeon – have extensive training and expertise in congenital heart disease. We are proud of the care we provide and openly share our volume & Outcome data. We are also happy to discuss with each individual family and directly address their child’s unique situation. 

Our Heart Center provides comprehensive care throughout the hospital stay through services such as  Fetal Cardiology, Cardiovascular Surgery, Interventional Cardiology & Catheterization, Regenstein Cardiac Care Unit, and Cardiac Anesthesia 

What does life look like after cardiac surgery(s)/procedure(s)? 

Many patients with CHD not only have a high level of survival but are also thriving. It is important to note that CHD does have an impact on the child and family’s life and require lifelong specialized care. Out Heart Center is prepared to care for your family throughout all phases of life with our comprehensive programs: Cardiac Neurodevelopmental Program, Outpatient Pediatric Cardiology , and our Adult Congenital Heart Disease Program. 

What are some tips for parents on how to best support/care for a child living with heart disease? 

  • Help your child become their own advocate. Talk with your child about their disorder. Congenital heart disease is a lifelong diagnosis. It is part of your child’s story but does not fully define their life. It is important for children to know details of their story so they understand their past and can appropriately advocate for themselves throughout life. We recommend educating your child about their CHD from an early age, as developmentally appropriate. Providing your child with the education around their diagnosis allows them to communicate their needs and any potential symptoms they may experience.  
  • Exercise and a healthy diet are important! It may be stressful to allow your child with CHD to be active, particularly after surgeries and interventions. However, research shows exercise is typically safe and beneficial. Exercise and participation in childhood activities is vital for both physical, mental and developmental health, and will set your child up for a healthy and happy adulthood. Please discuss exercise limitations with your child’s cardiologist and allow them to participate as appropriate. 
  • Teach proper dental hygiene. Some people with CHD are at increased risk for infections in the heart. The most common source of bacteria for these infections comes from the mouth. Therefore, good oral hygiene and preventing tooth decay is important for heart health. Families should discuss their child’s specific dental risks with their cardiologists, some may even require antibiotics prior to dentist appointments. 
  • Monitor your child’s development. There is a link between CHD and neurocognitive/developmental issues (e.g. cognitive, social, learning and mental health). Children and adults with CHD may require special education and support throughout their school and working years. They are also more prone to anxiety and depression. These are relatively “new” identified issues within the CHD world and our understanding of them is evolving. It is important for families to be on the watch for potential issues so they may discuss with their child’s cardiology care team and intervene early. At Lurie Children’s, we address these risks, as early as the first year of life, in our NICU-Cardiac Neurodevelopmental Program. 
  • Know your resources! Identify trusted sources of information and education. Your Lurie Heart Center team is always happy to educate! Seek out psychological support and resources, both from loved ones and professionals. Having a child with CHD can be scary for the whole family (parents, siblings, grandparents etc.). Taking care of your own needs allows you to best care for your child’s needs. The Lurie Children’s Heart Center has social work, mental health, financial counseling, etc. resources to support our patients and their families. 
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As one of the top pediatric heart centers in the nation, Lurie Children's expert team of cardiac specialists cares for patients with the most complex and serious heart conditions throughout their lifespans.

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