Congenital Heart Awareness – from our Partners at the CDC

Today’s guest post comes to us from the Centers for Disease Control and Prevention (CDC).  With-in the CDC, the National Center for Birth Defects and Developmental Disabilities (NCBDDD) is dedicated to helping people live to the fullest. They have been incredible champions for congenital heart defects and we are privileged to have them as a partner! This post is the first of 2 from the NCBDDD to celebrate national efforts to raise awareness of congenital heart defects. 

Meet Isabella. She represents 1 in every 100 babies born in the United States each year. Her parents first found out that she had a heart defect at 19 weeks of pregnancy. Remembering back to that day, her mother says, “the ultrasound tech hovered over her heart during the ultrasound, and our excitement quickly came to a halt. Our fear was confirmed a few moments later by our OB-GYN, and it felt as if our world was crashing down. Our daughter had a heart defect. Our family had no history of heart defects. Why was this happening to us?”

We at CDC are committed to finding the answers to these types of questions. These common conditions not only impact the individuals living with a heart defect, but also their families and communities.  Congenital heart defects are an important public health issue and CDC works to learn more about these conditions and improve the health of those living with them. We do this through public health tracking and research.

To track congenital heart defects, CDC has established state-based tracking systems. Information obtained from these systems help us understand if the number of people affected is increasing or decreasing over time and help us learn if these conditions are affecting certain groups of people. Tracking systems also help states plan for services for affected individuals and help ensure that babies and children receive needed care and services.

As medical care and treatments have advanced, people living with a heart defect are living longer, healthier lives. In fact, there likely are about 2 million children and adults in the United States living with a congenital heart defect. CDC recently launched a promising new program to monitor congenital heart defects among adolescents and adults in 3 sites (Georgia, Massachusetts, and New York) to understand health issues and needs across the lifespan that can help improve the lives of individuals born with these conditions.

We use the data we collect to learn more about what might increase or decrease the risk for heart defects as well as community or environmental concerns that need more study. CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on two large studies of birth defects: the National Birth Defects Prevention Study (1997-2011)  and the Birth Defects Study to Evaluate Pregnancy Exposures (which began in 2014). These studies work to identify risk factors for birth defects, including heart defects, in hopes of identifying prevention opportunities.

Each February, CDC joins families and partners to recognize Congenital Heart Defect Awareness Week. We look beyond the numbers and remember the individuals, like Isabella, affected by these conditions. After multiple procedures and open heart surgery, Isabella is almost 2 years old, a typical toddler with lots of spunk and personality. She loves playing outside with her older brother and playing with her many baby dolls, including listening to their “heart.” Her family would like other parents facing this unknown world of heart defects to know that there is hope. They encourage others to “Help spread the word about heart defects and how amazing these kids are! Our daughter, Isabella, is very special and inspires us daily!” Together with states, academic centers, healthcare providers, and other partners, CDC works towards a day when all babies are born with the best health possible and every child thrives.

Written By: Cynthia A. Moore, M.D., Ph.D. Director
Division of Birth Defects and Developmental Disabilities
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention