Anna Grace Bentley

Age:  10 years

Congenital Heart Defect (CHD):  Hypoplastic Right Heart Syndrome (HRHS); Transposition of the Great Arteries (TGA); Aortic Coarctation; Atrial Septum Defect; Ventricular Septum Defect; Pulmonary Stenosis

Brian & Tina Bentley had their world changed forever at their 20-week ultrasound appointment. It was a complete shock to find out their unborn baby girl had hypoplastic right heart syndrome (HRHS) among other heart defects.  Hypoplastic Right Heart Syndrome is a condition in which the right side of the heart does not form. “Up until that point, my pregnancy had been normal,” Tina remembers, “My heart dropped, and I was sobbing for the struggles I knew my unborn daughter would have to endure.”

Anna Grace was born at 39 weeks at the Medical University of South Carolina (MUSC). She was taken immediately to the PCICU (Pediatric Cardiac Intensive Care Unit).  At seven days old she underwent her first open heart surgery called the Norwood. After two long months in the hospital with many setbacks, Anna Grace was finally released from the hospital to go home with her parents.

However, at six months of age, Anna Grace needed to return to MUSC for her second open heart surgery, called the Bi-Directional Glenn.  The Glenn is the stage two surgery treatment for HRHS.  After recovery, she returned home with her parents.  This surgery allowed Anna Grace to come off many of the medications she had been taking and, although still fragile, live a more normal live.  

At three years of age, Anna Grace returned to MUSC for her third and final heart surgery called the Fontan.  This final surgery completed the reconstruction of Anna Grace’s heart to function as well as it can.  

“Anna Grace is ten years old now. I hope and pray through new technology, new advances in treatment, and new medication that she will be on this Earth for an extremely long time and be happy and healthy while doing it,” Anna Grace’s mother Tina Bentley said.  Uncertainty and suffering surrounded the Bentley family everyday while Anna Grace was enduring her numerous open-heart surgeries.  Watching their little girl be hooked up to machines was a common occurrence for the first few years of her life. Because of their faith in Jesus Christ and His unending promises, they have chosen to live a life of joy and hope. However, that does not mean there is a cure for Anna Grace’s HRHS. She will require lifelong cardiology appointments, heart catheterizations, and surgeries.  Join with us and help us find a cure for this horrific disease that affects 1 in 100 children.