Windland Smith Rice was a consummate nature and wildlife photographer, avid hiker, marathon runner, and more importantly a loving mother of two boys, ages six months and two years. Wendy, as her family called her, was a healthy, extremely active young lady. A picture perfect example of health…or so we thought. On May 31, 2005 this beautiful and beloved wife, mother, daughter and sister passed away in her sleep from Long QT Syndrome Type 2, a disorder of the heart’s electrical system which is often misdiagnosed and in many cases fatal.
For more than eighteen years, Wendy was misdiagnosed with a seizure disorder – by not one, not two, but three of the countries leading medical institutions. At the young age of sixteen, Wendy encountered her first symptom, a seizure-like episode on a hiking trip after being unexpectedly startled. From that moment similar episodes occurred periodically throughout each year until her untimely death at the age of 35; this being a classic presentation of Long QT Type 2. Her “seizures” occurred in the early morning hours when startled from sleep by a telephone or alarm clock – again, a classic symptom of Type 2 Long QT. Her “seizures” were not actually seizures, but rather an often times fatal arrhythmia of the heart called ventricular fibrillation. In so many cases with this silent killer, as it is often called, the first symptom proves to be the last; yet, Wendy showed all the familiar signs, and it is unfathomable that the doctors who examined and treated her were so unfamiliar with this fatal disease. It was determined from an EKG that Wendy had a prolongation of the QT interval, but she was told that the reoccurring “seizures” were in fact unrelated. Furthermore, she was told time and time again that there is so “little known about the electrical system” and that ultimately she “had nothing to worry about.”
We had never heard of Long QT Syndrome until just before Wendy’s death. After her death we learned that it is usually a genetic abnormality and often inherited. Our family went through a series of tests including EKGs and genetic testing. It was discovered that three out of Wendy’s nine siblings also tested positive for Long QT Type 2. One sister has since received an implantable cardiac defibrillator which, if implanted in Wendy as well, would have, in all likelihood, saved her life. One of Wendy’s sons, as well as, her niece and nephew have also tested positive for Long QT Type 2 and are currently being treated with beta blockers.
As a family we have gathered together with the medical community and with the SADS organization in an effort to encourage medical research and genetic testing and further, to create awareness among the public about this disease while encouraging people to know their family history and learn to recognize the signs.
We will continue to miss Wendy every day as if we just lost her yesterday. All we are left to do now is try…try to save even just one life by spreading awareness about this silent killer. Many people have suffered a loss and tragedy as a result of medical misdiagnosis – the loss of Wendy is ours. By sharing our story with you we hope that you will take the time to learn more about this fatal heart defect or any high risk medical history that may run in your family. As always, knowledge is everything. Please support this awareness effort and learn more at www.sads.org.
In loving memory of our daughter, sister, wife and mother