Clinicians and Patient-Family from The Children’s Hospital of Philadelphia Participate in Congenital Heart Lobby Day in Washington, DC
PHILADELPHIA, March 2, 2012 /PRNewswire-USNewswire/ – Approximately 1.4 million children and adults in the United States are alive today with congenital heart defects. Juliette Faughnan of Newtown, Pa. yesterday joined Yuli Kim, M.D. director of the Philadelphia Adult Congenital Heart Center, a joint program between The Children’s Hospital of Philadelphia and the Hospital of the University of Pennsylvania, cardiothoracic surgeon Dr. Stephanie Fuller from The Children’s Hospital of Philadelphia and more than 100 advocates from the Adult Congenital Heart Association and Mended Little Hearts at Congenital Heart Lobby Day in Washington, DC.
Juliette is mom to 3-year-old Maximillian, who was diagnosed after birth with a congenital heart defect called Transposition of the Great Arteries (TGA) and emergently transported to The Children’s Hospital of Philadelphia for a life-saving procedure and surgery to correct the arteries that were switched from their normal position.
She met with legislators and shared her family’s story in hopes of encouraging members of Congress to learn more about congenital heart disease and motivating them to support continued funding the Centers for Disease Control (CDC) efforts, to learn more about the prevalence, barriers to effective care, survival outcomes and neurocognitive outcomes of those living with Congenital Heart Disease, and also to increase funding to the National Institutes of Health (NIH) for congenital heart disease research.
In addition, the advocates urged their Representatives to join the newly formed Congenital Heart Caucus, chaired by Congressman Gus Bilirakis (R-FL), to show their support and receive continued information about issues related to congenital heart disease, including what the federal government can do to save money and lives.
Congenital heart disease is the most common congenital defect in babies and most are expected to survive and thrive well into adulthood,” said Yuli Kim, M.D., medical director of the Philadelphia Adult Congenital Heart Program. “The availability of funding is vital to development of new and better treatments for congenital heart disease and to continue to find some of the underlying causes of congenital heart disease. As we conclude Congenital Heart Disease Awareness Month, this is a wonderful opportunity to bring this important issue to the legislators who can help increase both awareness and funding.”
Heart defects are the most common birth defect in children, affecting 1 in 120 children. Survival rates for children with complex heart defects have improved dramatically over the past few decades but early diagnosis and treatment can make the difference.
The Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country, ranking third in National Institutes of Health funding. In addition, its unique family-centered care and public service programs have brought the 516-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu.
SOURCE The Children’s Hospital of Philadelphia