SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

A Life Saved, A Life Given

The Day was beautiful and sunny. It would normally have been just another summer day, but it was special because it was the day of my baptism. How little I imagined it would be the turning point of my life.

My life began on January 30, 1979, in Anchorage, Alaska. My parents, Richard and Mary Lynn, moved to Walla Walla, Washington, after I was born and built a beautiful home in the country. Growing up I played in the creek on our property, rode horses, played the piano and had many times playing with my two younger sisters, Talitha and Sarah, on our farm. On august 19,1989, everything changed.

After months of anticipation, the day of my baptism had finally arrived. The day dawned sunny and beautiful, family and friends gathered along the family creek where my sisters and I had played. The water felt wonderful as I stepped into the creek. That's the last thing I remember. As I stepped out of the water, I passed out and fell face first to the ground. When my mother got to my side, they turned me over a checked for breathing and a pulse. Finding neither, CPR was started and someone called 911. After approximately five minutes of CPR I regained consciousness, and was transported by ambulance to one of the local hospitals. My parents were told that I had possibly experienced a seizure and was seeking to gain attention. My parents did not know what to think, but took me home hoping that it was just something that happened due to the frigid water and heat of the outdoors. An appointment was made for me to see the family pediatrician who felt the possibility of epilepsy was probable and recommended an EEG. My parents also chose to have a cardiac workup done to rule out the possibility of cardiac issues. So I had an echocardiogram, a treadmill test, and a holter monitor. Looking back to the day of my baptism, we believed it was a miracle how God had intervened and saved my life. However, over the next two years I experienced three more "fainting spells" that lacked explanation or diagnosis, even with all of the cardiac tests or visits to the emergency room.

My third fainting spell occurred on March 18, 1991, while playing on a merry-go-round. The next day I experienced my fourth arrest. After this I was taken to the emergency room where my parents demanded to have another EEG done. When the physician came to examine me he made the comment, "OH this is the girl that faints," and turned and left the room. Later that day my parents decided that if I were to have another loss of consciousness they would take me to Children's Hospital and Regional Medical Center in Seattle to receive the help they needed. They felt that if I were to have another "fainting episode" in Walla Walla that I would die.

The next day, March 19, while playing my piano solo for a recital, I had a cardiac arrest. A call to 911 was made; CPR was started and continued for the next fifteen minutes before an ambulance arrived with a defibrillator. I was defibrillated once; an irregular heart rhythm was established and I was transported to Walla Walla General Hospital. I remained unconscious and in cardiac distress. The decision was made to airlift me to Children's Hospital in Seattle, Washington. For four days I remained in a coma-like state. Unable to respond coherently or remember anything, my parents were told that most likely I would suffer severe brain damage from the length of time my heart had stopped until I was revived. My family was told that the current state I was in was what they should expect for my future. After four days, I "awakened" with no memory of the previous events, but with all my functions intact. Later, doctors would say it was a miracle I was still alive and with no residual effects.

The cardiac team at Children's evaluated me and recommended that I be seen by a pediatric electro physiology EP cardiologist. As they were unable to completely diagnose my condition. Oregon Health & Science University (OHSU) in Portland, Oregon, was the nearest facility that would possibly have a pediatric EP cardiologist; otherwise I would need to travel back east. My parents were told that I would not be able to leave the hospital until a diagnosis was made or a treatment could be found. The fear was that I would not survive the next cardiac arrest. Children's Hospital contacted an EP cardiologist at the University of Washington who was willing to evaluate me. He did not work with pediatrics, but wanted to take a look and see what he might be dealing with. Thus Dr. Gust Bardy was introduced to my family. Dr. Bardy agreed to take me on as one of his patients.

After meeting with Dr. Bardy he suggested that an implanted cardiac defibrillator (ICD) would be the best form of treatment. I was transferred to the University of Washington after a week at Children's, where I would remain for the next three weeks. During those three weeks numerous electro physiology (EP) studies, echocardiograms, and cardiac angiographies were completed to see if any arrhythmia or structural heart defect could be found. It was during this time that I was diagnosed with possible Long QT syndrome or sudden cardiac death syndrome and bradycardia, and the need for an ICD became evident.

All of the electro physiology tests that were performed on my heart concluded that I would be able to receive the new smaller ICD model. This eliminated the possibility of open-heart surgery, which would have been necessary if I had needed the older ICD model. The new ICD consisted of the "can", or physical device, and three leads. One lead was used as a grounding patch and two leads were placed inside the heart. One lead was implanted in the base of the right ventricle and the other was positioned in the right atrium.

In April of 1991 my first ICD was implanted. The surgery took approximately four hours due to my size, the size of the device and the intensiveness of the procedure. The device was so large that it had to be implanted in my abdominal muscle. I was also started on Inderal, a prescription to help reduce my heart rate and hopefully prevent further episodes of ventricular fibrillation.

After a week of recovery I was finally allowed to return home to Walla Walla, where my life would never be the same. We all began adjusting to the physical restrictions in my activities; no swimming, horseback riding, bicycling or running. My medication left me groggy and lethargic. This was a routine that, after time, eventually became normal. Along with these changes, frequent trips to Seattle were made to see Dr. Bardy and monitor the ICD. Over the next few months I experienced numerous cardiac arrests, and was defibrillated by my ICD. After each cardiac arrest we would travel to Seattle so my device could be interrogated, reset and medication adjusted.

Within the first year after surgery I had to return to Seattle, for surgery, to re-attach the lead to the base of my heart because it was dislodged while I was playing around on a rowing machine.

I experienced so many cardiac arrests during the next two and a half years that my first ICD needed to be replaced sooner was expected. It had been the hope that the battery life would last for four to six years. The fortunate thing was that a new device had been developed that used a simpler two lead system and was much smaller. So my first device and leads were removed and the new device was implanted under my left breast.

In June of 1996, while carpooling to school with a friend my device suddenly shocked with no warning. It was found that I had a fracture in my lead and would need to have surgery immediately. So, on June 10, 1996, I received my third device. At this time Dr. Bardy again approached my parents with the idea of purchasing a portable Automatic External Defibrillator (AED) for our family, because of the possibility that my sisters could have the same fatal heart arrhythmia. Due to the cost of the AED, my parents decided to wait.

In August of 1996 I started my senior year of high school, while Talitha began as a new freshman. We had a wonderful time attending high school together and loved playing practical jokes on each other. I graduated in spring of 1997 and was preparing to go to college that fall.

On August 1, 1997, while vacationing in St. Maries, Idaho, on the St. Joe River with longtime family friends, my family suffered its greatest loss to Sudden Cardiac Death Syndrome. It was a beautiful summer day and we had all jumped in to "ride" the waves of a passing boat. As we finished riding the wake, we swam back to the dock to get out. I climbed out of the water and as Sarah started to follow me, Talitha said, "Get out of the way." Sarah turned around to see Talitha floating face down in the water. Sarah pulled Talitha's head up out of the water and my mom and I tried to pull her onto the dock. Talitha's body weight was too much for us and we yelled for help from friends nearby. CPR was started as soon as Talitha was on the dock. An ambulance arrived and Talitha was defibrillated three times with no success in obtaining a heart rate. It was decided that it would be best to transport her to the local hospital, so she was intubated and loaded into the ambulance. CPR was performed during the entire transport to the hospital. Upon arriving at the hospital in St. Maries Talitha was defibrillated two more times with no normal heart rhythm that was sustainable. At that point the doctor shook his head at the nurse standing by. As he turned his head, he saw my mother standing in the room and upon making eye contact with her, decided to try one more time. Upon the third shock an irregular heart rhythm was established that was sustainable. However, she was unable to breathe on her own. Talitha was airlifted to Sacred Heart in Spokane, Washington as soon as possible. During the next three days our family and close friends waited to see if another miracle would happen. On August 3, 1997, my beautiful little sister was pronounced brain dead. She was sixteen years old.

In the past Talitha had expressed a desire to be an organ donor. As our family struggled over the decision of organ donation we finally realized the importance of fulfilling Talitha's desire for the gift of life to be passed on.

Due to the genetic propensity for this fatal arrhythmia to affect my youngest sister, Sarah, my parents were strongly encouraged to have a defibrillator implanted as a precautionary measure. It was a difficult decision due to the impact it would have on her for the rest of her life. The ultimate decision of whether or not she would receive a defibrillator was left up to Sarah. She did decide to undergo the implantation, despite the fact that she had never exhibited symptoms of any cardiac arrhythmias.

Friends and family have ever been supportive of us through everything. They have provided support, meals, a shoulder to lean on and just plain friendship. Several friends did pull away due to the stressfulness of the illness and how much it became a part of our lives.

Dr. Gust Bardy has also become an integral part of our lives. He has always been an amazing support for my family and myself with his honest and open manner. Without this amazing physician, God only knows where we would be today.

My parents, Richard and Mary Lynn, are two amazing people who have fought for the lives of their daughters, survived the death of a child and been through more than anyone else I know. When I was first diagnosed with sudden cardiac death syndrome my parents asked that ICD's be placed in Talitha and Sarah as well. However, my sisters did not meet the criteria at the time and so ICD's could not be implanted. It was not until Thlitha's death, that Sarah finally met the criteria.

My little sister, Sarah, is truly an inspirational young lady. She has dealt with the frightening events of my diagnosis, survived the death of a sibling, and adjusted to life with an ICD of her own. She has gone through a remarkable transformation as she has grown into a beautiful young woman. Sarah is 18 years old and will be graduating from high school this year.

My mother, Mary Lynn, has had the amazing opportunity to speak for Agilent Technologies and share our story, to help promote the availability of portable defibrillators to the public.

Long QT has impacted my life in a profound way. Several of my close friends found my diagnosis too frightening to deal with and distanced themselves from me. Despite restrictions on my activities I remained involved in 4-H, rode horses, became a junior volunteer at Walla Walla General Hospital and earned my Certified Nursing Assistant (CNA) license my senior year of high school. I decided to attend nursing school and graduated with my nursing degree in May of 2001. On August 13, 2000, I married my high school sweetheart, Nicholas. Currently, I work as a registered nurse at Children's Hospital and Regional Medical Center of Seattle.

Long QT impacted the way I look at life and death today. I feel that I can be a support to families I work with as a nurse because of what I have been through. I have also had the wonderful opportunity to speak for several support groups of people who have implanted ICD's.

To this day people are amazed that I am alive and at what I, and my family, have been through. To look at me, you would never know that I have an ICD or that I even have heart arrhythmia. Because of my beliefs I do not believe luck kept me alive. I believe that the only reason I am alive today is because of God's intervention.