Indianapolis, Indiana – The Wolka brothers have a hereditary condition known as Long QT Syndrome, which can result in abnormal heartbeats and, in some cases, cardiac arrest.
Soon after delivery, Waylon and Ridge Wolka had ICDs placed in their chests to help control their heartbeat and periodically shock their hearts in the event of a cardiac arrest.
Waylon, the oldest of the two, is only 11 years old. After escaping cardiac arrest five times with the help of this technology, he is a living miracle.
“When I wake up I don’t feel anything, but I start crying,” Waylon Wolka said.
“Sometimes in the middle of a survival-type situation, you just zone in on what has to be done, and then it’s the aftermath that you just kinda fall apart,” April Wolka said.
Ridge Wolka, the younger brother, has not experienced a heart arrest. The Jervell and Lange Nielsen Syndrome, which affects two to four out of every million people, is a rare kind that both of the brothers share.
Dr. Leonard Steinberg, who has almost 20 years of experience in pediatric cardiology, sees the family at Peyton Manning Children’s Hospital in Vallonia, Indiana.
“For Waylon and Ridge, if the heart goes out of rhythm, it can’t effectively pump blood to the brain or other organs and they’re likely to pass out and look like they are having a seizure,” said Steinberg.
Both boys were born deaf due to the same genetic condition that causes heart problems. Their hearts are stabilized by ICD devices, and they have cochlear implants for hearing.
“These devices have revolutionized the care of both kids and adults with life-threatening arrhythmia disturbances where, as before, they lived with the constant fear that any moment could be their last moment,” said Steinberg. “These devices have provided a life-saving approach that allows them to carry on.”
According to April, her sons generally lead typical lives but also take safety precautions.
“It’s a delicate balance between quality of life and trying to be a kid. I don’t always get it right, but I try,” said April Wolka.
Everyday, April and her husband have to make sure their sons take their pills on schedule and drink enough water. As they get older, the brothers will continue to see a cardiologist to ensure the health of their hearts.
