Living with a Heart Defect

Congenital heart defects (CHDs) are present at birth, and they can affect the structure of a baby’s heart and the way it works. As medical care and treatment have advanced, babies with a CHD are living longer and healthier lives. Learn about CHDs and about Caden, a child living with a heart defect. You can also learn what CDC is doing to improve the lives of people with CHDs.

What Are CHDs?

CHDs are present at birth, and they can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart to the rest of the body. CHDs can vary from mild (such as a small hole in the heart) to severe (such as missing or poorly formed parts of the heart).

How Many Babies Are Born with a CHD?

CHDs are the most common type of birth defect. CHDs affect nearly 1% of births – or about 40,000 births – per year in the United States.1,2

Caden’s Story-Written by His Mom, Dawn

My son, Caden, was born with hypoplastic left heart syndrome, a type of CHD. After two previous normal pregnancies, I was shocked to receive this diagnosis during my 20th week of pregnancy with Caden.

Caden is a thriving little boy – one who is not defined by his heart diagnosis.

Caden has had three open-heart surgeries since birth and spent a lot of time in the hospital, but he is doing really well now. He loves soccer, has traveled to six countries, and he’s a crazy, rowdy child who tested as gifted in school.

I wanted to share Caden’s story to help give hope to other parents of a child with a CHD. It’s a scary diagnosis, but so much of your baby’s success is your own attitude and how you approach the challenges. I remember when I was pregnant, I only saw one positive success story—one article where the baby was clapping and looked happy and healthy. It was a story about survival. Don’t lose sight of that hope.

I also wanted to share his story to help raise awareness of CHDs. Caden may look normal and play soccer like any other child. But, at any point, the other shoe could drop. Regardless of what he looks like on the outside, he only has half a heart working for him on the inside. And that’s why research is so important. If not for the research that’s been done, Caden wouldn’t even have a story. He wouldn’t be here with us today.

Caden has taught us lessons that we might never have learned otherwise. He taught us a different way of looking at the world. He’s a picture of inspiration for many people. Most importantly, he is a thriving little boy – one who is not defined by his heart diagnosis.

CDC thanks Caden and his family for sharing this personal story.

CHD Care Across the Lifespan

At this time, even with improved treatments, many people with a CHD are not cured, even if their heart defect has been surgically repaired. As a person with a heart defect grows and gets older, further heart problems may occur. Additional medicines, surgeries, or other procedures may be needed after the initial childhood surgeries. Some people with heart defects need lifelong care to stay as healthy as possible.

CDC’s Effort to Study CHDs Across the Lifespan

As medical care and treatment have advanced, babies with CHDs are living longer and healthier lives. This presents new challenges for families and the healthcare system in order to meet the special health needs of these individuals. CDC researchers have estimated that about 1 million U.S. children and about 1.4 million U.S. adults are living with CHDs.3

CDC has received funding from Congress to expand our tracking of children and adults with CHDs in the United States. These activities will help us better understand the survival, use of healthcare services, and longer-term health outcomes of children, adolescents, and adults living with CHDs.

From 2012-2015, a pilot project was done to enhance CDC’s efforts to track adolescents and adults with CHDs at three sites – Emory University in Atlanta, Georgia, the New York State Department of Health, and the Massachusetts Department of Public Health. In 2015, a new four-year project was started to expand upon the pilot project. Five sites—University of Colorado in Denver, Duke University in Durham, North Carolina, Emory University in Atlanta, Georgia, the New York State Department of Health, and the University of Utah in Salt Lake City—are working to better understand the use of healthcare services and the long-term health outcomes of people with CHDs.
CDC is working on another project called CH STRONG (Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG), a survey that collects information on healthcare use, barriers to care, and quality of life among adults living with a CHD. In collaboration with the March of Dimes, the CDC, the University of Arkansas for Medical Sciences, and the University of Arizona College of Medicine began collecting data in 2016.

These activities can provide important insights to guide our continued efforts to prevent CHDs and support families affected by them.

More Information

References

Hoffman JL, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. 2002;39(12):1890-1900.
Reller MD, Strickland MJ, Riehle-Colarusso T, Mahle WT, Correa A. Prevalence of congenital heart defects in Atlanta, 1998-2005. J Pediatr.2008;153:807-13.
Gilboa SM, Devine OJ, Kucik JE, Oster ME, Riehle-Colarusso T, Nembhard WN, Xu P, Correa A, Jenkins K, Marelli AJ. Congenital heart defects in the United States – Estimating the magnitude of the affected population in 2010. Circulation. 2016;134(2):101-9.