Ashley, Peyton & Avery’s LQTS Story
In 2017, when Peyton was seven years old, his doctor recommended a new medication. Before prescribing it, he advised Peyton to see a cardiologist for clearance.
His mother, Ashley, took him to see Dr. Patricia Thomas at Ochsner in New Orleans, where Peyton underwent a series of heart tests, all of which came back normal. However, the following day, Dr. Thomas called Ashley and expressed her desire to re-examine Peyton's results because she had a gut feeling that something was not right.
Upon re-examining the results, Dr. Thomas discovered Peyton's QT interval was longer than normal and requested that he return for further testing. Unfortunately, genetic testing for Long QT Syndrome was not available in their area at that time.
Finally, during Peyton's check-up in August of 2021, Dr. Thomas informed the family that genetic testing was now available, and one month later, Peyton's results confirmed he had a genetic mutation and was diagnosed with Long QT Type 1. As a result, Dr. Thomas ordered genetic testing for both parents.
On October 15th, Ashley received a call from Dr. Thomas, stating her test results showed the same genetic mutation as her son, and she was diagnosed with Long QT Type 1 as well. This diagnosis meant that other family members, including Peyton's sister Avery, would need to be tested.
November 9th proved a day that brought the family's world to a standstill. Avery was scheduled for a preventive EKG due to the diagnoses of her mother and brother. During the EKG, Dr. Thomas’s reaction to the results made Ashley worry. Normally Dr. Thomas displayed an amazing bedside manner, always asking the family about sports, or travel plans, but on that day, she couldn’t mask her genuine concern.
Avery was diagnosed with Long QT Type 1, like Ashley and Peyton, but Dr. Thomas also identified another heart arrhythmia called Wolff-Parkinson-White Syndrome (WPW). In WPW, an extra signalling pathway between the heart’s upper and lower chambers causes a faster than normal heartbeat. This fast heartbeat (tachycardia) is especially dangerous for someone who also has an irregular heart rhythm like in Long QT Syndrome. This was the first time Dr. Thomas had ever seen both arrhythmias together, and her diagnosis led to a series of tests the family was not prepared for, including stress tests, an electrophysiology study, and an eight-hour ablation.
Ashley was originally crushed by the diagnosis of both her children. Not only did she feel guilt for passing on the genetic mutation to her kids, but she was also fearful of what their future held. However, it didn't take her long to enter what she calls "mama bear mode".
Ashley immediately took action and figured out what needed to be done. All three were prescribed beta blockers to manage their prolonged QT, and Ashley made it her mission to ensure everyone responsible for her children, including teachers, coaches, and family, was CPR trained. She also made sure Automated External Defibrillators (AEDs) were present and easily accessible at school and their sports facilities.
Ashley also set out to make life as normal as possible for her children, and she was successful. Avery and Peyton are both very active teenagers. Peyton started playing baseball when he was only three and has continued to love to play even after his diagnosis. He also loves the outdoors and spends time on the water fishing, tubing, and boating. Avery is a competitive gymnast who loves the beach, tubing down the river, and hanging out with friends.
Along their journey, Ashley has helped make light of some of the limitations associated with their diagnoses. The family must bring an AED with them everywhere, which they have nicknamed "Ed". Their running joke is to make sure that Ed is in the car with them before they leave the house.
Overall, the family has been able to navigate the past couple of years with grace. Their message for the Long QT Community is one of courage and strength:
"You can't change it, so don't worry about it." - Avery
"You don't have to worry about it, just trust your doctors." - Peyton
"It's okay to feel sad or scared, but that's only somewhere you visit. You don't want to put down roots and live there. Pull up your bootstraps, work with your doctors to figure out your next step and get to work." - Ashley
The family hopes that by sharing their story, people will evaluate how prepared they are for a cardiac event. Whether it's through CPR training or having AEDs in schools, they want to change the narrative of "it won't happen to me" or "not in my town”. The family also encourages other families to get tested. Ashley knows she is lucky to be prepared for a cardiac event and is advocating for those who are not: "If we can save the life of one person by sharing our story, we've done our job."
For more information on genetic testing, visit The SADS Organization’s website at: www.sads.org.
