The stories of tragic early deaths had been passed down for generations.
Wilodene Gist had heard numerous accounts of family members dying unusually young. Aunts, uncles and cousins had developed seizures as teenagers and only grown worse as young adults.
Fainting and seizures were common. Her father died of heart failure in his sleep. Even Gist started having the spells when she was 10 years old.
“There were so many cases, all over the same family,” she said. “No one knew what it was.”
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Only in the past decade have Gist and her daughter, Jackie Renfrow, uncovered the hidden killer that had stalked their family over the years. Both women suffer from a genetic condition known as long QT syndrome, a genetic defect that quickens the pace of the heart until a person passes out.
Left untreated, it can deteriorate and ultimately cause death. Renfrow’s two children, Jimmy Brackett, 21, and Crissy Brackett, 22, both died from long QT.
As Renfrow has dedicated her life to educate people throughout central Indiana about the danger of long QT and other heart defects, Gist has shared a lifetime of experience with the syndrome to highlight how much damage it can do.
“It’s so tragic that so many people have died from this — in their 20s. They’ve all been so young. That is what’s scary about it,” Renfrow said.
Jimmy Brackett died in 2000 from heart failure caused by long QT syndrome. Crissy Brackett died in 2002.
Since Renfrow discovered the cause of the twin tragedies, she has become a tireless advocate educating the public about long QT and other heart defects.
She has worked to help fund and organize screenings for young people throughout central Indiana. Fundraisers organized by Renfrow have helped pay for free heart screenings around the area, as well as to purchase defibrillators at local schools, churches and community gathering places.
To support those who have dealt with tragedies related to heart failure, she founded an Indianapolis chapter of the Sudden Cardiac Arrest Association. Her hope is to start another support group targeted at families who have children with heart defects.
“There is very little awareness out there for children or young adults about this,” Renfrow said.
Gist and her family lived on a farm in rural Kentucky in the 1930s. Her father, William Sears, had wanted to move to Indianapolis to find better work, but his family talked him out of coming, concerned that he wouldn’t be able to manage his health without his relatives around.
Sears would have “smothering spells” — random occurrences of breathlessness. He had bouts of anxiety, which has since been proven to be associated with long QT syndrome.
“All of the sudden, he’d run to the door to try and get his breath,” she said.
In 1932, Sears died in his sleep. He was 28 years old.
“He had his arms up over his head, real peaceful like. But he was already cold when they found him,” Gist said.
Besides her father, uncles, cousins and other relatives had died in a similar fashion.
“I think if we could go back and check, I feel like it came from my grandmother’s side, because she was real disturbed at times,” Gist said.
Gist was about 10 years old when she noticed that she’d approach blackout, feeling unconsciousness coming on before sitting up and steadying herself. One day, she remembers standing by her window, and the next thing she can recall, she was on the floor with her grandmother screaming.
Those episodes were sporadic.
“With my dad dying, I figured I just inherited heart disease,” she said. “In a way, I did.”
Not until she was in her early 20s, as she started having children, did the blackouts get worse. Any time she tried to go to sleep, she’d have a seizure or a spell. She would scream and pass out at random times.
When they took her to the hospital, doctors gave her a blood transfusion, grasping at ways to solve the malady. Even then, the seizures didn’t stop. The episodes seemed to come on any time something startled Gist, like a ringing phone or a slamming door.
“It wasn’t anything to see my older sister go flying through the house because mom was having a seizure,” Renfrow said. “We didn’t know what the correlation was, but now we do.”
The unknown malady, and the fact that they were powerless to treat it, weighed on the family. They tried to find connections wherever they could, and established rules to try and govern it.
Phones were unplugged at night and alarm clocks were forbidden, to prevent being startled. The night before Gist’s father died, he had eaten fried fish, then had some ice cream for dessert.
From that point on, members of the family weren’t allowed to eat fish and dairy together.
“I was never allowed to eat fish and drink milk,” Gist said. “It was that way for all of my life. Nobody in my family would do it.”
Gist was 72 years old before realizing what she had. After Renfrow’s children died, she discovered the long QT syndrome that affected her own heart. Urging everyone in the family to get tested, doctors found the gene in Gist.
Doctors help her, Renfrow and others in the family with beta blockers to reduce blood pressure, and defibrillators in case their hearts stop beating. Monitors in their homes go off if their heartbeats become off-kilter.
Since they were diagnosed, many more family members have described symptoms: feeling their hearts flutter, unfounded anxiety and seizures.
Both Gist and Renfrow have tried to educate as many people in their families as they can.
“It’s a shame, but it’s hard to get people to listen,” Gist said.
Renfrow worked with Benjamin Helm, a licensed genetic counselor for Riley Hospital for Children at Indiana University Health, specializing in cardiovascular genetics. Helm drafted a letter explaining what long QT syndrome is, what the risks are and how relatives can get tested and take steps to control it.
The gene mutation that predisposes people to develop the syndrome has been found in Renfrow’s family, and Helm highly recommended that relatives meet with a genetic counselor.
“It is important to consider this information since it can be life-saving for family members at risk of (long QT syndrome) predisposition. Early diagnosis and proactive management can help reduce the chances for adverse events to happen to someone,” Helm said.
Progress has been made in monitoring and controlling long QT syndrome. The public is becoming more aware of the danger it and other similar heart defects can pose, even if symptoms remain hidden until later in a person’s life.
Working together to educate more people, Renfrow and Gist hope there’s a point where people with these genetic mutations can be at peace.
“I just hope they get to the place where they can have a child without being fearful that they’ve passed it on,” Gist said.
Giving Hearts a Hand
What: A Greenwood-based nonprofit organization that helps fund cardiac screenings for high school athletes.
Information: Contact president Doug Meyer at firstname.lastname@example.org or go to givingheartsahand.org.
Sudden Arrhythmia Death Syndrome
What: A national group aimed at educating about heart arrhythmia and to support the families of children and adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.
Jackie Renfrow has also started a website telling her family’s story, and helping provide information about long QT syndrome. People can reach her at jackierenfrow.com.