Editor’s Note: The author of today’s guest blog post, Jackie Renfrow, found out about Long QT Syndrome only after the hereditary disease devastated her family. Now she campaigns for public awareness and heart safety so that other families will be spared.
Like all parents, I worried about my children. As Jimmy and Crissy were growing up they both suffered what we thought of as seizures. I worried about them, but I knew that these seizures were part of my family’s medical history. Jimmy and Crissy took the medications they were prescribed, and I thought they would live normal, productive lives. I was thrilled when Jimmy got married and had a beautiful daughter.
Jackie Renfrow's son Jimmy
My optimism was shattered by a phone call I received April 15, 2000. Jimmy was having a seizure, could I come? That call was followed by another call telling us that Jimmy had died of sudden cardiac arrest.
He was just 22 years old. He left behind a wife and a two-year-old daughter.
After that, I was so afraid for Chrissy. When she became pregnant, I was more worried than ever. My own seizures had increased after the births of my children and I was afraid this would happen to her, too.
Chrissy spoke with her doctor about my concerns, and he did an MRI, blood work, and an EEG. However, he didn’t do an EKG, and it turns out that was the test that should have been done.
Chrissy gave birth to a baby girl, Jessica, Nov. 23, 2001. She was thrilled to be a mom. I still couldn’t shake the feeling that something was going to go wrong. Everyone said this was because I was still suffering from Jimmy’s death the year before.
Jackie Renfrow's daughter, Crissy
On July 25, 2002, I received a call saying that Crissy had passed out and her husband couldn’t get her to come to. When I arrived at the hospital the doctor took us into a room and told us that Chrissy was gone. They were so sorry. Like Jimmy, she was a victim of sudden cardiac arrest.
I couldn’t believe that this was happening. How could I lose both of my children to something that no one could explain?
It was about 10 months after Crissy died that my mom was rushed to the hospital for what we thought was a panic attack. In her case, all the necessary tests were done and we discovered that she has a medical condition called Long QT syndrome. It’s a heart rhythm abnormality that, if left untreated or not treated properly, can cause seizures and sudden cardiac death.
Long QT syndrome is hereditary. I have it, and so do my two granddaughters. So did my Jimmy and Crissy. It turns out that a simple EKG test could have saved my children’s lives.
I’m now doing everything I can to make sure that other families find out about Long QT syndrome so their children can get diagnosed and treated. And I want my community to have automated external defibrillators (AEDs) available so that when Long QT syndrome leads to sudden cardiac arrest, it doesn’t have to be fatal.
I’ve started a chapter of the Sudden Cardiac Arrest Association in Indianapolis and am working with Cardiac Science, doctors, parents, and others to promote heart health. In memory of Jimmy and Crissy and on behalf of my grandchildren, I’m going to make sure that other families with Long QT syndrome are spared our losses.
Read about Jackie’s efforts to encourage youth heart exams in this IndyStar.com story.
June 20th, 2011 at 6:21 pm
Jackie, so sorry for your loss. My daughter has LongQT Type 1 and we are so lucky that we found out. We first thought it was a drowning. THen seizure like activity and then finally someone did the test and read it right to catch it.
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