In 2003, Sarah Anne Voyles was a normal, active 13-year-old with a happy childhood behind her. Her only complaints as a child had been severe asthma and allergies, which had caused her parents to do everything they could to make their home as hypoallergenic as possible. One morning, Sarah Anne went for a run with her older sister, who was home from college. She only made it a few yards before feeling so out of breath that she turned around and nearly collapsed at her mom’s feet. She looked gray, and her family was alarmed.
Two weeks prior, the deaths of two student athletes in their area had been reported in the news, and their symptoms seemed eerily similar to Sarah Anne’s. Her mom insisted on more tests, and they ended up at Sibley Heart Center Cardiology.
Sibley cardiologist Jim Sutherland, MD, who is now retired, finally uncovered the problem. Sarah Anne had an atrial septal defect (ASD) — a 33 mm hole where there should have been a wall dividing the left and right atriums. Because the hole was large, doctors told the family it was like blowing air into an open room instead of through a straw, making murmur sounds difficult to detect. When Sarah Anne was running or engaging in physical activity, the oxygenated and unoxygenated blood mixed, resembling an asthma attack.
When the echo tech said she needed to go get the doctor, my mom knew immediately they had figured out what was wrong, and that it was going to be way more than we expected or wanted it to be,” Sarah Anne said.
In a few weeks after going to summer camp, Sarah Anne found herself undergoing a catheter procedure to repair her ASD. She was nervous but said the Sibley staff did a great job of comforting her and her family. When Sarah Anne woke from the procedure, everything looked stable at first but when she began to complain of chest pains, doctors discovered the repair device had dislodged. She would need open heart surgery immediately.
Sarah Anne said she was pretty out of it and had no preparation for what was about to happen. She later learned that her pediatric surgeon was concerned not only about her physical well-being, but her emotional well-being as well. He told her parents after surgery that he was able to make her incision just under her tan line from camp.
“Body image is such a big thing,” Sarah Anne said. “To have a doctor who understood that this 13-year-old had come in for one procedure and left with something else and to be willing to take into account my physical appearance means a lot to me to this day.”
After college, Sarah Anne transitioned to Emory for her cardiac care follow-ups. She said that Emory and Sibley partner well to treat adults who had CHD as children differently from heart patients who enter care as older adults. Even so, she felt some apprehension at first.
“Going from my pediatric cardiologist to my adult cardiologist was difficult, but the transition was seamless,” Sarah Anne said. “They worked with me, they answered the hard questions, and I thought to myself, ‘Why did I ever have those doubts and fears?’”
Today, Sarah Anne works for Sen. Johnny Isakson’s office in Washington, D.C. She said she got into politics to give a voice to people who didn’t have one. She recommends that teens with CHD use their voices to raise awareness of heart disease in young people.
We can’t prevent CHD but by raising awareness, we can stop the deaths,” Sarah Anne said. “Don’t shy away from having your story told. You may save another life. My life was saved because of the stories of those two athletes. The moment you’re silent is the moment you let the disease win.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.