Long QT Syndrome: Family Turns Tragedy Into Triumph

Kathy Cundiff loves the waves of the ocean, especially since she was raised on the coast of Virginia. Now that she is a mother of two in Culpeper, she is focused on waves of a different kind — the electrical waves of her heart. Doing so just may have saved her life, and the lives of her two daughters.

Kathy and her daughters all have long QT syndrome, a form of abnormal heart rhythm
Kathy Cundiff (center) and daughters Molly Winstead (left) and Emily Phillips

It all started three years ago. Kathy and her husband were driving on a beautiful summer evening when the couple received a tragic phone call. Kathy’s sister had died mysteriously in her sleep. “She was only 40 and she was very healthy,” she says. “We had no idea what happened and no one could give us any answers.”

There were no clues, until Kathy’s niece almost experienced the same fate. At age 24, she collapsed and her heart stopped beating. Fortunately, she was revived with CPR. Medical tests revealed that Kathy’s niece had a heart problem called long QT syndrome.

Long QT Syndrome and the Heart’s Electrical System

“Long QT syndrome is an inherited disorder with the electrical system of the heart,” explains Rohit Malhotra, MD, a UVA cardiologist with special training in electrophysiology, the electrical patterns of the heart. “It can cause fainting and seizures due to abnormal heart rhythms that lead to a drop in blood pressure,” he says. It can also cause sudden death.

An amazing power station located in the heart generates electrical impulses telling it when to beat. These are the up and down waves seen on an EKG. The letters P, Q, R, S and T are used to label EKG waves, and QT is a specific interval. In long QT syndrome, the QT interval is longer than normal.

Often there are no warning signs that someone has long QT syndrome. Because the disorder is inherited, genetic testing can play an invaluable role in revealing who is at risk for the condition. Kathy, her niece and two daughters all tested positive.

“Our first thought was, what can we still do? Can we ride roller coasters? Can we scuba dive?  What can trigger the problem?” Kathy says.

Malhotra provided reassurance and advice. Long QT syndrome can be managed with medication or an implantable cardioverter-defibrillator if needed. Malhotra says common drugs can cause a longer QT interval, such as certain:

  • Antihistamines
  • Antidepressants
  • Antibiotics

These need to be avoided, as well as caffeine.

“This was the hardest part for me,” Kathy says. “You always saw me with a Redbull before I found out I had this condition. I cut back of some on the volunteering I was doing, but one day I still hope to scuba dive.”

Armed with the knowledge that long QT syndrome can be managed, Kathy doesn’t let fear stop her. She says being under the care of a cardiologist with training in the electrical system of the heart brings her peace of mind.

Trips to the beach will always remind Kathy of her sister, and they also remind her that her family’s hearts are safe.

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Make sure to check back tomorrow to find out why a personal trainer’s heart suddenly stopped beating.

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