The nightmare was starting all over again.

Jackie Renfrow had suffered through the deaths of both her son and her daughter. They had died suddenly in their sleep, without any answers about the cause.

Then her granddaughter Alexis Barrett started exhibiting the same seizures and dizziness that led to her children’s deaths.

“It was this black cloud hanging over me that I had been fearing this whole time,” Renfrow said.

This time, though, Renfrow knew how to help. Armed with the knowledge she had gleaned over more than a decade spent advocating for heart defect awareness, she was able to get Barrett the treatment she needed.

Barrett was suffering from long QT syndrome, a genetic defect that quickens the pace of the heart until a person passes out. Renfrow has it, and tests have revealed both of her children had it.

The condition can be managed through medication and equipment such as defibrillators and pacemakers. But doctors have to identify it first.

That is why Renfrow has made it her mission to tell the world that young people can have — and die from — heart defects.

“If someone knows the symptoms and signs, we can save a life,” she said. “That’s why I keep doing this.”

In her Franklin home, Renfrow keeps mementos of her children Jimmy and Crissy Brackett. Framed photographs cover the walls and sit on shelves, showing them as little kids, teens and young adults.

She also has a collection of newspaper stories and magazine profiles that showcase the work she’s done to raise awareness. For more than a decade following her children’s deaths, she was a crusader spreading information about the importance of checking for long QT and other heart defects.

Simple cardiac screenings could have identified and prevented their deaths. So Renfrow has worked to help fund and organize screenings for young people throughout central Indiana.

She founded an Indianapolis chapter of the Sudden Cardiac Arrest Association to support those who have dealt with similar tragedies and educate the public. It is part support group, part fundraising body and part community advocate.

Renfrow also arranged a series of benefits to fund heart screenings. The fundraisers also helped pay for 20 defibrillators at local schools, churches and community gathering places.

“It should be like a fire extinguisher. They should just be available — school system, church, anywhere there’s a crowd, there should be a defibrillator,” Renfrow said.

Jimmy Brackett, 21, and Crissy Brackett, 22, both died from long QT. The genetic malfunction causes the heart to have a prolonged rhythm that can lead to fainting. Left untreated, it can deteriorate and ultimately cause death.

The condition exhibited itself years before Renfrow’s children died, in the form of seizures that started in childhood. Many of Renfrow’s family members had suffered similar seizures.

Renfrow had hoped she could control their condition through medication.

But on April 15, 2000, she received a phone call that Jimmy was suffering a severe seizure. Before she could run out the door, the phone rang again. Jimmy was dead, and the cause of death was unconfirmed.

The tragedy repeated itself with Crissy Brackett. Though Renfrow had persuaded her daughter to get an MRI, blood work and an electroencephalogram to search for possible causes to the seizures, doctors found nothing.

Then on July 25, 2002, Renfrow received another phone call. Crissy had passed out and was unresponsive. Paramedics took her to the hospital, but by the time Renfrow arrived, Crissy had died.

The mysterious killer was later found to be long QT.

Tests revealed that Renfrow had the syndrome as well. Doctors theorized that in the case of Renfrow’s other family members, it had always been misdiagnosed as epilepsy.

Alexis, Jimmy Brackett’s daughter, also was diagnosed with long QT. She was 13 when she suffered her first major heart incident. She started having seizures one weekend in 2011, so Renfrow took her to Riley Hospital for Children at Indiana University Health for treatment.

The doctors were almost too late to save her. Alexis went into cardiac arrest and needed to be resuscitated while at the hospital.

“They had to place her in (the intensive care unit), keeping her heart regulated. It was slowing down and speeding up, so they had to watch it all night long,” Renfrow said.

Surgeons were able to implant a defibrillator and pacemaker in her heart to monitor and steady the rhythm. If Alexis’ heart started beating unpredictably, it would fire electric pulses to steady it again.

“She’s been doing great ever since,” Renfrow said.

Renfrow’s other granddaughter, Crissy Brackett’s daughter, Jessica, went through a similar experience.

When cardiologists and electrophysiologists found that Jessica, 14, had long QT, they preemptively implanted a defibrillator and pacemaker. She had been having bad dizzy spells and feared she would pass out, a telltale sign of the arrhythmia.

Renfrow still worries that Jessica will suffer a serious attack that even her defibrillator can’t correct. She has guardianship of Jessica and often lies awake at night with worry. She remembers when her daughter would roll off the bed and hit the floor during a seizure.

“I still listen for that sound in the middle of the night, worrying about it for Jessica,” Renfrow said. “That’s the scariest thing.”

In her work spreading awareness, Renfrow has been adamant that people pay attention or reconsider their family medical history. If members have suffered fainting spells, seizures or sudden death such as massive heart attack, that could be a telltale sign of a heart defect such as long QT, she said.

She also recommended that, if a child is experiencing dizziness or seizures, the family should see a cardiologist and a neurologist.

“You need to check everything and be aware that it could be the heart,” Renfrow said.

About long QT syndrome

What is long QT syndrome?

A disorder of the heart’s electrical activity. It can cause sudden, uncontrollable, dangerous arrhythmias in response to exercise or stress. Arrhythmias are problems with the rate or rhythm of the heartbeat.

People who have the syndrome can also can have arrhythmias for no known reason. However, not everyone who has it has dangerous heart rhythms. When they do occur, though, they can be fatal.

What is the outlook for people who have it?

More than half of the people who have untreated, inherited types of long QT syndrome die within 10 years. However, lifestyle changes and medicines can help people who have it prevent complications and live longer.

Some of these lifestyle changes and treatments include:

  • Avoiding strenuous physical activity or startling noises.
  • Adding more potassium to your diet, as your doctor advises.
  • Taking heart medicines called beta blockers. These medicines help prevent sudden cardiac arrest.
  • Having an implanted medical device, such as a pacemaker or implantable cardioverter defibrillator. These devices help control abnormal heart rhythms.

What causes long QT syndrome?

It can be inherited or acquired. “Inherited” means you’re born with the condition and have it your whole life. Inherited conditions are passed from parents to children through genes. “Acquired” means you aren’t born with the condition, but you develop it during your lifetime, typically from medication you’ve taken.

What are the signs and symptoms?

If you have long QT syndrome, you can have sudden and dangerous arrhythmias, which often first occur during childhood. Signs include:

  • Unexplained fainting. This happens because the heart isn’t pumping enough blood to the brain. Fainting may occur during physical or emotional stress. Fluttering feelings in the chest may occur before fainting.
  • Unexplained drowning or near drowning. This may be due to fainting while swimming.
  • Unexplained sudden cardiac arrest, a condition in which the heart suddenly stops beating for no obvious reason. In about 1 out of 10 people who have long QT syndrome, sudden cardiac arrest or sudden death is the first sign of the disorder.
  • Often, people develop an abnormal heart rhythm during sleep. This may cause noisy gasping while sleeping.

SOURCE: National Heart, Lung and Blood Institute

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