Rare cardiac disorder strikes three times in Burbank family
Jenna Bordelon, Burbank Leader, September 30, 2000
BURBANK -- More than a year has passed since 19-year-old John Swanson was found dead in his bedroom from a genetic disorder, but for his family the grief remains close to the surface. By all accounts, Swanson, a UC Santa Barbara student and Burbank High School graduate, was a healthy, happy boy with a penchant for sports and a dry sense of humor. On July 14 1999, Swanson told his parents he was going to take a nap before dinner. It was the last time they saw him alive.
Adding to the family's grief, it took six months before they found out they he died from a rare cardiac condition known as Long QT Syndrome. Since then, John's father, Blair, and his 16-year-old brother, Rick, have been diagnosed with the disorder.
"No one thinks a healthy son is going to die," Blair Swanson said, the pain of discussing his eldest son's passing straining his voice. "(Rick) is healthy, but we're also grieving John's death and we'll never get over the fact that the way that he died was so unusual."
With Long QT Syndrome, the first symptoms are usually a sudden loss of consciousness and death. This week was "National Long QT Week," which has prompted the Swansons to speak out about the devastating disorder. "It's hard to understand why this tragedy happened to us," mother Gun Maria Swanson said. "I have been in shock for a very long time and there is nothing that can prepare you for this." Long QT Syndrome affects the heart, causing it to take longer than normal for the electrical rhythm to recharge. According to the Sudden Arrhythmia Death Syndromes Foundation, or SADS, when the abnormal rhythm occurs, the heart stops pumping blood to the brain.
Gun Maria Swanson's wish is that more could be done at the high-school level by coaches and doctors who work with athletes. "I think when they do competitive sports they should go a little bit further and see if they would do a holter test or a treadmill," she said, referring to a procedure that monitors fluctuations in heart rhythm. "It could have saved John's life.
But former Burbank High School tennis coach Clyde Richards said the tests are too expensive for the $900 team budget. Like others close to John, he said he never saw any symptoms that would suggest the teenager was sick. "John hated to run but that was part of his makeup," he said. "The way he hated to run, he would have told me something." "I knew how hard he worked and how much he gave back to society, so it was a loss for all of us."
Ironically, John's death may have saved Rick's life. On April 20, doctors at Cedars-Sinai Medical Center implanted a defibrillator in Rick's chest to monitor his electrical impulses. Rick, who, like his brother, plays on the Burbank High School varsity tennis team, said he has not let the implant stop him from enjoying life to the fullest. "I don't want to have any restrictions," he said. "He was kind of a mentor," Rick said of his brother. "I just followed his example and tried to do well in school." Rick said it has been a difficult year for his whole family. Poster-size pictures of his brother still adorn the house. "It goes both ways," he said. "It's kind of nice to see him, but sad at the same time."
