Managing Congenital Heart Disease – A Lifelong Journey

Tammy CatesWhen Tammy Cates was born at a small regional hospital, the doctors immediately discovered that she was experiencing difficulty breathing. When they were unable to discover the cause of her breathing problems, she was transferred to the Egleston campus of Children’s Healthcare of Atlanta. At Egleston, she was diagnosed with a heart murmur and discharged home with instructions for her parents to monitor the murmur in the hope that it would resolve on its own.

When she returned for a follow-up visit three months later with additional symptoms, she was immediately admitted to the hospital for extensive testing, which revealed that she had been born with transposition of the great arteries as well as a ventricular septal defect.

At the age of three months, she underwent a Waterston shunt at Egleston, a procedure in which an opening between the ascending aorta and right pulmonary artery is created to improve blood flow to the lungs.

At age six, Cates underwent the Mustard procedure to restore circulation of oxygenated blood throughout her body. In addition, a special tube, or “conduit,” was placed to allow blood to bypass a congenital narrowing below her pulmonary valve.

Throughout her childhood, Cates experienced a recurrent abnormal heart rhythm that was treated with a variety of medications, cardioversion (electric shock to restore a normal rhythm) and, ultimately, implantation of a pacemaker.

Transfer to the Emory Adult Congenital Heart Center (EACH)

Cates’ experience with EACH began in 2004, when she consulted her family doctor about abdominal pain and swelling. Testing revealed spots on her liver that suggested a possibility of cancer. During exploratory surgery, it was discovered that the spots were not cancer at all, but the result of liver damage due to congestive heart failure. At this time, she was referred EACH Medical Director Wendy Book, MD, who began medication therapy to manage her heart failure.

In February 2005, Emory cardiothoracic surgeon Tom Vassiliades, MD, performed a minimally invasive surgical procedure to replace her pacemaker and add epicardial leads to allow for cardiac re-synchronization therapy (CRT). This was a unique procedure in light of her defects and resulting heart failure, as well as her prior Mustard procedure, and as a result, Cates experienced remarkable improvement in her heart failure symptoms.

In 2009, Cates began experiencing symptoms of poor circulation in her extremities, and Dr. Book performed a diagnostic cardiac catheterization. The catheterization revealed significant narrowing in the conduit that was placed in childhood, which was restricting blood flow to her lungs.

In September 2009, EACH Surgical Director Brian Kogon, MD performed a complex, high-risk surgical procedure to replace the narrowed conduit. To minimize risk due to the complexity of her multiple defects and diagnoses, Dr. Kogon, in collaboration with Emory thoracic surgeon Dan Miller, MD, used a small incision in the left side of her chest and removed a single rib to gain access to her main pulmonary artery without having to go back through scar tissue under the breastbone built up from previous surgeries.

Impressions of the EACH Center

“I definitely feel like the EACH Center team follows me very closely,” says Cates. “And they’re always available, whether it’s in person for an appointment, or by phone or email.”

“To me, one of the most important things about the EACH Center is not necessarily the excellent care I’ve received there,” Cates continues, “but the way they treat my family. Both Dr. Book and Dr. Kogon go to great lengths to include my family in the management and treatment process, which really helps relieve our anxiety.

“When I had my surgery with Dr. Kogon, it meant a lot to me that he involved my family in the decision-making process and always kept them in the loop. And when I have visits with Dr. Book, she’s great about understanding and validating what I’m going through and explaining things to me, including my treatment options.”