Ruth Perez remembers the days when she could hardly get out of bed because of the headaches and shortness of breath. Always tired, she could hardly do a thing because her body couldn’t handle the exertion.
It didn’t matter if she was sitting or walking, sleeping or awake, her heart beat as if she had just finished running a race, Perez said.
The reason was a congenital condition known as a ventricular septal defect, an abnormality that develops before birth in which a hole is present in the wall separating the two lower chambers of the heart. Oxygen-rich blood gets pumped back into the lungs instead of out to the body, causing the heart to work harder. Untreated, the defect can lead to potentially deadly complications, including pulmonary hypertension and heart failure.
“During all those years I was praying to God and asking him for help,” Perez said. “I wanted to live.”
“This type of congenital heart defect is typically dealt with not long after birth,” said Dr. Patrick Roughneen, a professor of Cardiothoracic Surgery and medical director of UTMB’s Adult Congenital Heart Center. “That is the common standard but that did not happen with Ruth.”
UTMB is one of a few accredited centers in the nation recognized by the Adult Congenital Heart Association for the surgical treatment of adults with congenital heart disease. The adult congenital heart team includes surgeons, cardiologists (both adult and pediatric), interventional cardiologists and radiologists who specialize in the complex care of adults with congenital heart defects.
“Even if a patient may have had surgery to repair a heart defect as a child, that doesn’t mean they are cured for life—they may require more operations or follow-ups as adults,” said Roughneen. “These patients have unique needs, which general cardiologists may not be aware of. As more children who are diagnosed with congenital heart defects live well into adulthood, the need for doctors and surgeons able to treat them is growing.”
Perez, now 31, was born in Houston but her mother did not have the economic means to have her heart condition treated when she was a baby. It wasn’t until last year that she was finally able to do something about it. Her uncle encouraged her to sign up for health insurance through the Affordable Care Act, she said.
“’Maybe it’s time for you to take care of your disease’ my uncle told me,” Perez said.
Then, fortunately for Perez, the cardiologist she saw recommended she go to UTMB. Perez was scared about the prospect of surgery but even more scared about what would happen if she decided to forgo treatment. She eventually met with Roughneen, who said he could do the operation.
Roughneen and the UTMB congenital heart team successfully patched the hole in her heart with a piece of Gore-Tex like material that the heart will eventually incorporate into itself.
Now, after the surgery, Perez says she can feel the difference.
“I sleep well,” Perez said. “I’m gaining weight. I feel great. I feel happy. I can do a lot of things that I couldn’t before.”
Now that she can walk—and even run—she hopes to travel as she has always wanted to do, Perez said.
For Roughneen, this is another example of how evolving surgical techniques and treatment at specialized centers like UTMB are helping patients with congenital heart conditions live better, longer lives.