Ten Things to Know about Congenital Heart Disease

ICU nurses care for the tiniest hearts

Congenital heart disease (CHD). Have you heard of it? We are often met with surprise when talking to friends and families about our profession and our patient population in the pediatric cardiac intensive care unit (ICU). We hear things like, “Children have heart surgery?” or “There are cardiac ICUs for children? I thought heart disease was an ‘adult’ thing!”

In fact, many children need specialized cardiac services for heart disease, both acquired and congenital—perhaps more than many people realize. It’s likely that you or someone you know has been affected by CHD, and raising awareness and funding is vitally important to the continued success of CHD research and treatment advances. We have compiled a list of the things we wish others knew about CHD, based on our collective experiences and those of our patients.

  • Between 1 in 100 and 1 in 120 children around the world are born with CHD, making the condition the most common birth defect worldwide. The majority of defects are believed to be caused by a combination of genes and other risk factors, such as environmental exposures during fetal development.1
  • Heart disease is not just for adults! Because CHD affects an individual beginning in infancy, tens of thousands of infants and children in the United States alone need medical and surgical care in order to survive and thrive. Pediatric patients require an entirely different type of care than adults, one that is more focused on physical and psychosocial development.2
  • The 20-week ultrasound during pregnancy is not (just) a gender scan. This ultrasound enables your doctor to scan the baby’s entire anatomy, looking at things such as the spine, lungs—and the heart too. Most CHD cases can be diagnosed in utero, enabling for more precise medical and surgical care, as well as time for parents to make educated decisions about their child’s care.3, 4
  • CHD is a lifelong journey. Even infants who receive a surgical anatomical correction at birth may face challenges such as nutrition, arrhythmias, and need for future interventions for the rest of their lives.5
  • There are dozens of types of CHD. From problems with the walls of the heart, to abnormal connections within the heart, to abnormal valves and veins. CHD is not “one size fits all.”6
  • Approximately one in four children born with CHD has a critical congenital heart defect, necessitating surgical intervention within the first year of life.7 If every hospital screened newborn babies for critical CHDs using pulse oximetry, at least one death due to an undiagnosed critical CHD could potentially be avoided for every 200 children with a critical CHD.8
  • With the many exciting advances in care for children with CHD, many children have thrived in adulthood. An estimated 1.4 million adults live with CHD in the United States.9 Living with CHD as an adult presents unique challenges. Despite these challenges, adults with CHD go on to have their own families and fulfilling lives not defined by their medical conditions.
  • More than 50 percent of pediatric heart transplants are estimated to benefit children with CHD.10 Organ donation saves lives—of all ages.
  • Twice as many children die from CHD each year than from all forms of childhood cancer combined.12, 13 And, it is 60 times more common than all forms of childhood cancer combined, but it only receives approximately one-fifth the funding.13

A diagnosis of CHD indeed marks the beginning of a journey for thousands of families every year. Thanks to the tireless and sustained efforts of so many dedicated researchers, medical professionals, parents, patients, and advocates, the CHD journey is now one of hope—and a journey no family has to make alone.


  1. Facts about Congenital Heart Defects. (2015, December 22). Retrieved from https://www.cdc.gov/ncbddd/heartdefects/facts.html
  2. Living with a Congenital Heart Defect. (2016, May 18). Retrieved from https://www.cdc.gov/ncbddd/heartdefects/living.html
  3. Fetal Echocardiogram Test. (n.d.). Retrieved from http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/SymptomsDiagnosisofCongenitalHeartDefects/Fetal-Echocardiogram-Test_UCM_315654_Article.jsp#.WHAPF3KV_IU
  4. Mid-pregnancy anomaly scan – Pregnancy and baby. (2017, May 01). Retrieved from http://www.nhs.uk/Conditions/pregnancy-and-baby/Pages/anomaly-scan-18-19-20-21-weeks-pregnant.aspx
  5. The Impact of Congenital Heart Defects. (n.d.). Retrieved from http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/TheImpactofCongenitalHeartDefects/The-Impact-of-Congenital-Heart-Defects_UCM_001218_Article.jsp#.WHAWQ3KV_IU
  6. Critical Congenital Heart Disease. (2011, July 2011). Retrieved from https://www.nhlbi.nih.gov/health/health-topics/topics/chd
  7. Key Findings: Estimating the Number of People with Congenital Heart Defects Living in the United States. (2016, July 5). Retrieved from https://www.cdc.gov/ncbddd/heartdefects/features/kf-chd-estimates-us.html
  8. Screening for Critical Congenital Heart Defects. (2016, February 11). Retrieved from https://www.cdc.gov/ncbddd/heartdefects/screening.html
  9. Adult Congenital Heart Disease: One Page. (n.d.). Retrieved from https://www.achaheart.org/media/1582/acha-one-pager-final.pdf
  10. Thrush, P., & Hoffman, T. (2014). Pediatric Heart transplantation—indications and outcomes in the current era. Journal of Thoracic Disease, 6(8), 1080-1096.
  11. Get the Facts about Congenital Heart Disease. (2017). Retrieved from http://www.chop.edu/heartstories/get-facts-about-congenital-heart-disease#.V5AKfZOANBc
  12. We Jump, We Shoot, We Save. Learning About Heart Health. (2011). Retrieved from https://www.heart.org/idc/groups/heart-public/@wcm/@fdr/documents/downloadable/ucm_447572.pdf
  13. CHD Facts and Statistics. (2016). Retrieved from http://chfn.org/resources-chd-facts/facts-statistics/

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