SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

About a year after her father's sudden death, Toni, her brother Jimmy and I moved to a small duplex at the edge of Peachtree City. Our house had been sold and once Jimmy graduated from high school we were planning to move, probably out of state. The morning of May 19, 1988, I called Toni to get ready for school. I knew she had not been feeling well the past few days. She had complained of a sore throat, and was stressing over her final exams. I was sitting in the kitchen of the small duplex when I saw Toni come out of her bedroom and go into the bathroom. As she reached to turn on the light, she quietly collapsed to the floor. Our German Shepherd heard her fall and headed toward the door. When I saw her, she was unconscious on the floor, her skin an all too familiar color. Her father had passed out several times prior to his death, so when I could not rouse her, I screamed for Jimmy and dialed 911. I then called our pastor and asked him to start a prayer chain.

The fire station was just a few minutes away and Malcom Cameron, a Peachtree City EMT, was in the shower. As he reached out of the shower for a bar of soap, his pager went off. He put on his clothes and headed to our house. When he arrived he began CPR. He continued CPR and a few minutes later the ambulance and police arrived. They used the defibrillator on her, and her heart began to beat. As they began to put her on the stretcher, her heart stopped. Once again they used the defibrillator. Her heart started once more as they put her in the ambulance.

It was a 20 minute ride to the hospital in Newnan. Just as they entered the driveway to the hospital, Toni's heart stopped once more. They wheeled her in and put her on life support. She was unconscious for the next 17 hours. We did not know what had happened to her, did not know if she would recover, and if she did, did not know how long she had been without oxygen.

There is a little chapel at the hospital that I believe has a direct line to heaven. That is where we prayed and that was where we were when they came to get us to say that she was awake. We ran to see her. The hospital had checked for aneurysm, stroke and everything they could possibly think of. Someone mentioned that her father had died of a heart attack and the cardiologist called several Atlanta hospitals to see if they could have an echocardiogram done. The cardiologist said he was able to get Toni in to Piedmont Hospital to have the test done and they arranged to transport her by ambulance. When we arrived at Piedmont, they were waiting and took her right in. When the test was complete, Dr. Blincoe of the Northwest Cardiology Clinic met with us to tell us that the echocardiogram showed no problems.

I met my husband in 1962 and we married the following year. As I got to know his family, I learned that his mother had died suddenly in her sleep in 1937 when he was only 3 months old. She had not complained of any illness and the death certificate said the cause of death was acute indigestion. She was in her twenties when it happened.

During my husband's childhood, he had suffered many fainting spells. He said that most of the time he did not tell anyone what had happened. My brother-in-law recalls once that he had to be rescued while swimming, but that was really the only time he was aware that it happened. For several years after we were married, my husband did not have any of the fainting episodes. Then, around 1970 he fainted at home and I had to call the EMT. He had these spells three or four other times over the next few years, but I only recall having to call the EMT twice. After each time, he would see a doctor to have a series of tests done, but find nothing wrong. For a while things would return to normal. In early 1980, he was diagnosed with high blood pressure and was prescribed Corguard®. For a few years after that everything seemed to be okay.

Around 1984, he began having many more of the near-fainting spells. He went to numerous doctors but other than a "nervous stomach" and high blood pressure, nothing was found. He remained on Corguard® for high blood pressure and was careful of his diet. In September of 1986, he had a spell at the airport but did not lose consciousness and refused to let me call an ambulance. When we arrived home, he was unable to leave the house for several days but seemed to get back to normal after resting. He finally agreed to see a doctor about a week later and after extensive testing he checked out okay. Then on an afternoon in November of 1986, he died of an apparent heart attack.

Doctors were running similar tests on Toni, and similar negative results were occurring. There were so many unanswered questions over the years. However, this time there was finally an answer: Elongated Q-T Syndrome, or Long QT. It could be treated. Toni would most likely live a healthy life. As we learned more about this strange disease, all the pieces began to fit. On that Sunday morning in May 1988, by the grace of God, my daughter recovered completely. The Lord was surely with all of us through each and every episode that my husband had had over the years and He blessed us with the greatest miracle of all - with my daughter's life. It was the Lord's timing that caused us to have moved so close to the fire house. It was His timing that caused Malcom to reach out of the shower at the precise moment the call came in (I wondered why Malcom's clothes were wet and what was in his hair ((it was still the shampoo.)) It was His timing that prompted the doctors at Newnan Hospital to investigate the suggestion that her heart could be to blame. It was His timing that allowed the opening at Piedmont Hospital for Toni to have tests done. It was His timing that put Dr. Blincoe and his colleagues on staff that day. It was His timing to allow a young resident doctor with the team of doctors tell me that he had just finished writing a paper on the disease. It has been a "life-chain" of miracles.

Toni's brothers, Jimmy and Albert, were tested immediately. While one showed some indication of the Long QT, the other apparently did not. It was recommended that both should take the beta blocker, as a precaution. I spent many hours trying to recall any unexplained incidents that may have occurred during their childhoods that could be linked to Long QT. I could recall none. All three children had always been extremely active. Their father was an avid Steelers fan and loved the game. Consequently, the boys played little league football from a very early age. All three children loved to swim. They all had had many of the normal childhood illnesses with the general medications prescribed. Even with all of the bumps and bruises, several surgeries, and a few hairy accidents, all three grew to be healthy, happy adults. We were truly blessed.

Each of my children are now married to wonderful people. Since all were keenly aware of the family history, as the babies began to come along, each was tested. Toni had two pregnancies, and two beautiful little girls. Both of her girls, Amy and Abby, have been checked repeatedly and neither shows signs of Long QT. Albert, the oldest, was recently checked again. He, too, shows no sign. However, his two sons, Roman and Reed, who were tested as babies and did not show any signs, were recently tested and both boys do have the disease. Toni's brother, Jimmy, tested positive earlier and takes the beta blocker. When his daughters, Isabelle and Gabbie, were born they were also tested. Recently, both girls were diagnosed with Long QT. Over a month's time, Robert Campbell, M.D., Chief Medical Officer at Sibley Heart Center of Children's Healthcare of Atlanta, tested all six of my grandchildren and found that four of them have Long QT. To know that it is there and can be treated gives them a better chance to live long and healthy lives. While being aware gives an edge, it is still a mystery that the sons of the son who does not show any symptoms of Long QT have the disease, while the daughters of the daughter who does have Long QT do not. I hope the events since my husband's death in 1986, that day in May 1988, when Toni almost lost her life, and all of the events since, have played some small part in the great strides made in diagnosing and treating this mysterious disease. I will be forever grateful for the past and present care and attention that Dr. Blincoe and Dr. Campbell have given my children and grandchildren. Both doctors even recommended genetic testing to see if medical science can gain more knowledge on Long QT. Dr. Blincoe and Dr. Campbell have made themselves available both day and night to answer our questions, calm our fears, and give us all a brighter hope for the future. I am forever grateful for the Lord's blessings in our lives.