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My Story - Michelle Tipton

by Pamela M. on Thursday, May 30, 2013

Michelle Tipton North Dakota

I lost my teen age son to a congenital heart defect.  On March 25th, 1999, I was the mother of two boys, Shannon, 17 and Dustin, 12.  Around noon, I received a phone call from Shannon’s high school. He did not make it to school that day.  My father found Shannon dead in his bedroom.

The state medical examiner said there was no reason for cardiac arrest, and rumors suggested drug overdose or suicide.  My instinct told me that this just doesn’t happen to a 6’1” 190-pound, 17-year old who had annual physicals and ate well-balanced meals. As expected, the autopsy and toxicology reports revealed no evidence of drugs and no apparent reason for cardiac arrest.  I was told I may never find out the cause of death.

Two months after Shannon’s death, I took Dustin to our local doctor for a football camp sports physical.  Given what happened to Shannon, I asked him to listen to Dustin’s heart a little longer. Our doctor felt that wasn’t necessary and told us to bring him back when he is older.

When June arrived and it was time for Dustin to attend football camp, I could not find his sports physical. As I searched the house, I found a copy of Shannon’s sports physical conducted 13 months prior to his death.  The information I saw brought me to my knees. Shannon had checked YES to: dizziness during and after exercise; chest pain during and after exercise; trouble breathing during and after activity and “Has anyone in your family died of heart problems or sudden death before age 50? “ As a result of finding the sports physical, we were able to get an electrocardiogram (ECG) for Dustin which recorded “abnormal” T waves.

In August, we traveled to the Mayo Clinic, in Rochester, MN. I brought a copy of Shannon’s autopsy report and ECG’s from my mother, father, sister and myself.   The doctor explained that my ECG could be labeled normal by most, but showed borderline prolonged QT intervals. Dustin had an ECG, an echocardiogram and chest x-ray and all tests were normal. We discussed family history. Both my mother and I had episodes of lightheadedness. He suggested an appointment with the director of Mayo’s Long QT Syndrome Clinic. He drew blood to test our family genetically for the presence of defective ion channels in the heart and sent us home.

We traveled back to Mayo Clinic in October where we underwent more tests which resulted in a clinical diagnosis of Long QT Syndrome.  We were placed on beta-blocker therapy and were told, “no competitive sports and try to have someone with you, at all times, who knows CPR.”

 In February, 2000, our physician and his colleagues discovered, through a molecular autopsy of Shannon’s heart tissue, a defect in our family’s KVLQT1 gene.  Dustin and I were genetically diagnosed along with my mother and sister.  Later that year, Dustin and I were told that beta-blocker therapy may not protect us. We both received implanted cardioverter defibrillators (ICDs).

One year later, our physician published an article in the American Journal of Forensic Medicine and Pathology about Shannon and what had happened to us. It stated that more than 4,000 people between the ages of 1 and 22 will die annually in the U.S. due to “unknown” causes. He asked that examiners save tissue/blood/organs for genetic testing on cases of sudden unexplained deaths. This may save the lives of other family members by identifying those with LQTS at risk of sudden cardiac death.

 It was also made known to us that Dustin’s presentation of low fetal heart rate at late term pregnancy should now lead to cardiac testing at birth.