Congenital heart disease, which used to be considered a death sentence, is now a managed disease for adults thanks to advances in medicine and specialized programs such as the Adult Congenital Heart Disease Program at UTHealth.
In recognition of its expertise in serving adults with congenital heart disease (CHD), the UTHealth Adult Congenital Heart Disease Program, which includes the UT Physicians Adult Congenital Heart Disease Clinics, has received a prestigious accreditation from the Adult Congenital Heart Association (ACHA). There are 30 accredited centers across the country.
Individuals with CHD, the most common birth defect, are living longer. CHD is diagnosed in one in 100 births, and there are now 1.4 million adults in the U.S. living with one of the many different types of congenital heart defects that range among simple, moderate, and complex.
“This is a great honor,” said Poyee Tung, MD, medical director of the UTHealth program and an associate professor of cardiovascular medicine with McGovern Medical School. “Accreditation is a testimony to the great work of our adult congenital heart team. We will continue to be advocates for our patients and strive for the best care.”
Those patients include Julia Villarreal, whose heart defect was surgically repaired at 2 weeks of age. Villarreal is now in her 30s and was helped through a difficult pregnancy by Tung and her colleagues.
“The doctors were very helpful throughout my pregnancy. They reassured me that everything would be all right,” said Villarreal, the proud mother of a healthy baby boy named Jo-Nah, “And it was.”
Because of advances in care, today there are actually more adults with congenital heart disease than children with congenital heart disease, according to Mark Roeder, president and CEO of ACHA.
Survival and medical care for babies with critical CHDs are improving, reports the Centers for Disease Control and Prevention. Between 1979 and 1993, about 67% of infants with critical CHDs survived to one year. Between 1994 and 2005, about 83% of infants with critical CHDs survived to one year.
“Accreditation will elevate the standard of care and have a positive impact on the futures of those living with this disease,” Roeder said.
ACHA is a nationwide organization focused on connecting patients, family members, and health care providers to form a community of support and network of experts with knowledge of congenital heart disease.
The UTHealth Adult Congenital Heart Disease Program received accreditation by meeting ACHA’s criteria, which includes medical services and personnel requirements, and going through a rigorous accreditation process, both of which were developed over a number of years through a collaboration that included doctors, physician assistants, nurse practitioners, nurses, and patients at UT Physicians.
Participating in the HEARTS athlete screening program, the caregivers in the UTHealth program see patients in the UT Physicians Multispecialty – Bayshore clinic, 11476 Space Center Blvd., Suite 100 (713-486-6325), and UT Physicians Adult Congenital Heart Disease Clinic – Texas Medical Center at 6410 Fannin St., Suite 600 (832-325-7216). There are plans to expand to more clinics.
About the Adult Congenital Heart Association
The ACHA is a national not-for-profit organization dedicated to improving the quality of life and extending the lives of adults with congenital heart disease. ACHA serves and supports the more than one million adults with CHD, their families and the medical community – working with them to address the unmet needs of the long-term survivors of congenital heart defects through education, outreach, advocacy, and promotion of adult CHD research. For more information about ACHA, contact 888-921-ACHA or visit www.ACHAHeart.org.
The ACHA ACHD Accreditation Program was partially funded by Actelion Pharmaceuticals U.S., Inc. ACHA and Actelion Pharmaceuticals have partnered together since 2007 to support the CHD community.