A brand new rhythm
Southwest Georgia youth finds new beat on life after doctors discover rare heart rhythm disorder.
Juice Staff Published: 6/30/2020
Last September, the Smith family of Moultrie was enjoying a Sunday outing at Wild Adventures theme park in Valdosta. Their family fun quickly ended when son, Rylan, 9, had a seizure and collapsed while at the bungee jumping attraction.
“We were so worried about him,” said Rylan’s mom, Chantel Smith. “Rylan is an active kid and constantly on the go, playing baseball, football and hip hop dancing. Normally, you can’t stop him.”
Rylan was taken to the ER at a local hospital, where doctors examined him. They monitored his vital signs and gave him fluids for dehydration before he was discharged home.
Four days later, a second incident occurred. Rylan, a third-grader at Odom Elementary School in Moultrie, collapsed again while at school. Rylan was taken to the ER at a different local hospital. Doctors ordered a CT scan and MRI, and the results were abnormal. Doctors recommended that Rylan be transferred to a children’s hospital for specialty care.
“As a nurse, I was familiar with Wolfson Children’s Hospital and I immediately knew that’s where I wanted Rylan to go for care,” said Chantel.
World-class pediatric cardiology care
Rylan was transferred by the Kids Kare Mobile ICU to Wolfson Children’s Hospital of Jacksonville, which provides specialized pediatric cardiac care for children in North Florida, South Georgia and beyond.
When they arrived, they were met by pediatric cardiac electrophysiologist Sunita Ferns, MD, and the medical team at Wolfson Children’s. Dr. Ferns is one of the few physicians in North America to be trained and board-certified in pediatric electrophysiology and adult congenital heart disease in addition to her board certifications in pediatrics and pediatric cardiology.
Dr. Ferns performed heart arrhythmia diagnostic testing after reviewing Rylan’s medical history, family medical history and a physical examination. The testing included an electrocardiogram (EKG) and an epinephrine drug challenge to evaluate the electrical activity and the electrical pathways of Rylan’s heart.
“When I saw Rylan for the first time, what stood out was that he had experienced multiple episodes of near cardiac arrest, raising the possibility that something wasn’t right,” said Dr. Ferns.
The diagnosis – Long Q-T syndrome
After reviewing the results, Dr. Ferns diagnosed Rylan with Long Q-T syndrome, a rare heart disorder that can cause fast, chaotic heartbeats. With Long Q-T syndrome, the heart’s electrical system takes longer than normal to recharge between beats. The defect causes a delay which can lead to fainting, seizures or even sudden death. Some people are born with a genetic mutation that causes Long Q-T syndrome, while others acquire the condition from certain medications, mineral imbalances or medical conditions. There is no known cure for the disease at this time.
“It was an alarming diagnosis, but I was thankful because Dr. Ferns knew immediately what was wrong with my son,” said Chantel.
Dr. Ferns prescribed a beta-blocker medication to help Rylan’s heartbeat more slowly. He remained in Wolfson Children’s Cardiovascular ICU for three days for observation and genetic testing.
Life-saving monitoring and care
Rylan returned to Wolfson Children’s Hospital in October 2019. Dr. Ferns performed an outpatient procedure, inserting a small cardiac monitor under the skin in Rylan’s chest. The monitor tracked his heart rhythm and wireless communications allowed data from the device to be transmitted real-time, around the clock, to Wolfson Children’s for review by Dr. Ferns.
After monitoring Rylan’s heart rhythm condition, Dr. Ferns recommended an automated implantable cardioverter-defibrillator (AICD), a sophisticated device that is implanted in the body. The AICD works like a lifesaving pacemaker but can also detect dangerous heart rhythms and perform defibrillation, shocking the heart back to normal. The AICD monitors the heart via a wire that extends from the device and attaches to the inside of the heart. The AICD activity can then be monitored remotely by his doctors via a secure web-based satellite connection from any location in the world. Dr. Ferns surgically implanted the AICD in Rylan’s chest at Wolfson Children’s Hospital in December 2019.
“The heart team at Wolfson Children’s was wonderful,” said Chantel. “They answered all of my questions and kept me informed throughout Rylan’s surgery.”
Rylan continues to receive follow up care with Dr. Ferns at Wolfson Children’s. While he is restricted from playing competitive sports and has to limit contact sports, Rylan is able to enjoy most of his normal recreational activities. He will have to have the AICD battery replaced every 10 years.
“I encourage all parents to follow their instincts when it comes to their child’s health,” said Dr. Ferns. “Chantel knew something wasn’t right with her son and sought out an expert opinion. In Rylan’s case, it proved to be life-saving.”
The Terry Heart Center at Wolfson Children's Hospital provides life-saving pediatric cardiovascular care for children of all ages, along with adults born with heart defects. For more information, visit our Congenital Heart Center webpage.