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Heartbeats and Hope: From Seizures to Strength

Unity Health saving lives one heart at a time

By Jennifer Webb

Photos by Searcy Living Photography

Jacque set her alarm before she went to bed at cheer camp. She was a high school junior, and she wanted to be sure she was up in time for the next day.

When her alarm went off the next morning, that was the last thing she remembered.

All the other girls were clustered around her, concern all over their faces. She felt foggy and confused. Why was everyone staring at her?

“You had a seizure and were out of it,” one of the girls told her.

That explained all the looks of concern and the crowd. They called her grandparents, who were closest to the cheer camp, and her parents. Both came quickly and took her to the hospital.

They weren’t exactly sure what happened but shortly thereafter, it happened again. They diagnosed her with a seizure disorder. Since it occurred while she was talking on the phone, they hypothesized that the phone call might have been a trigger and told the teenage girl to stay off her phone. The EEG, which is the tracing of the electrical waves of the brain, had been normal, but it was the best cause they could ascertain.

After a third episode, they started Jacque on a medication for seizures called Keppra. She took the Keppra for a while but couldn’t tell that it was doing any good. She stopped taking it (and thank goodness she did).

Time went on, and she could go six months or more without having a spell. She started noticing that they were much more likely when she was startled.

She graduated, married Austin Thomas, the love of her life, and they welcomed the birth of a beautiful baby boy. Jacque was now in her twenties and living a life she had always dreamed of, but there was always a fear in the back of her mind of the seizures. There was still no good answer as to what was causing them.

One came while she was at the house alone with the baby. She felt foggy and couldn’t remember things. Baby? Why was there a baby in the house? Was it her sister’s baby? It must be her sister’s baby. Austin . . . where was Austin? She called him.

“Where are you, Austin?” she asked. Her voice sounded abnormal to him.

“I’m at work. Are you ok?” he asked.

“Oh, ok,” she replied, still sounding dazed. “I just couldn’t remember when you left for work.”

It slowly started to come back to her. The baby . . . that was HER baby crying, not her sister’s! She must have had another seizure.

The next one came when Austin was home. Again, she heard the baby cry, but she knew by this time that she needed to get up slowly and not rush. She got up and started to walk, but then fell out on the floor with another seizure.

“Jacque was now in her twenties and living a life she had always dreamed of, but there was always a fear in the back of her mind of the seizures.”

Austin watched in horror, waiting for it to end, but it seemed to go on and on. She was still unresponsive. Then he realized she wasn’t breathing! Did his young wife just die in front of him? He called 911 and sprang into action, starting chest compressions and CPR. He wasn’t going to lose her if he could help it! Breathing into her mouth, compressing her chest, and desperately praying to God, it seemed like an eternity, but EMS arrived, and he was able to step back. He called her dad and stepmom.

They had to shock her heart multiple times. She was in an atypical rhythm. It didn’t seem real. He could NOT lose his precious wife. She started breathing again, and they loaded her up in the ambulance to rush her to the emergency department. Her stepmom came and got the baby, and her dad accompanied them to the hospital.

They kept her in a medically induced coma hooked up to all sorts of wires and beeping machines. The EKG, which is the tracing of heartbeats and the heart’s electrical signals, showed a prolonged QT interval. Her heart muscle was taking longer to contract and relax than usual, affecting her heart rhythm. Could this have something to do with her seizures?

When they took her out of the medically induced coma, she knew her husband and could talk to her dad, but every six hours seemed to be a “reset.” She was confused. She didn’t know where she was and couldn’t remember what had happened. They started to worry about what the seizures might have done to her brain.

They still could not find any apparent cause and were about to move her to the medical floor when she had another episode. She was still hooked up to all the monitors so they were able to record exactly what happened in her body when she had a seizure.

“She no longer has to live her life in fear of having a seizure in the middle of whatever she’s doing.”

Cardiologist Dr. Katherine Durham, looked at the data. There had to be a clue somewhere and some way to help this young mother. Those were “Torsades de Pointes,” a specific type of atypical heart rhythm that can lead to sudden cardiac death.

Jacque had “Long QT syndrome.” The problem was not in her brain but in her heart! Patients with Long QT syndrome can develop atypical heart rhythms. They don’t get the blood flow to the brain that they need, and if it lasts long enough, it causes death. That’s what had been causing Jacque’s seizures! She had an atypical electrical circuit in her heart.

With that vital piece of information in hand, the next step was finding out how to treat it. The first thing she did was thank God for revealing the problem and that Jacque had stopped the Keppra medication, which could have made the QT interval worse. Dr. Durham ordered another medication called propranolol which helps lower the occurrence of the Torsades de Pointes.

That helped some, but for most patients, the ultimate treatment was to put in a defibrillator. Since Jacque was so young, it wasn’t an ideal solution to have leads that live in the heart and have to be changed out. She consulted her partner, Dr. Eric Robinson, who does all the implanting of devices at Unity Health and he consulted electrophysiologist, Dr. Tom Wallace at St. Vincent’s. An electrophysiologist is a specialized cardiologist who can be thought of as an “electrician of the heart.”

They came up with a solution and put in a defibrillator but outside of her heart. The leads sit in the center of her chest but don’t live in her heart. That’s her life insurance policy. If the device detects that she has an atypical rhythm, it first tries to pace her out of it, and if that doesn’t work, it will shock her. No more waiting for EMS to come while doing CPR. The device will get her heart back to its regular rhythm.

Jacque now lives a fairly normal life. The propranolol has worked beautifully and so far, she has not had to be shocked. She no longer has to live her life in fear of having a seizure in the middle of whatever she’s doing. She can drive and hold her son (who is now a healthy 3-year-old). She’s not scared of being alone with him.

Before, she was always scared - scared to go to sleep at night, afraid to be alone, afraid that a seizure would strike if she got startled.

Since there are different types of Long QT syndrome, she opted to go through genetic testing, along with her son. Hers is inherited, so she wondered if she had passed it to her son. He does not have the genetic markers for the disease. She has Type 2 Long QT syndrome which is often triggered by something that startles a person - a phone ring, a baby crying, an alarm, anything. Many people don’t know they have Long QT syndrome, and it has been suggested that it might account for sudden unexplained faintings, seizures, and deaths. According to the National Library of Medicine, it is estimated to account for 12% of SIDS deaths in infants.

Jacque is a survivor, and she has been blessed with a tremendously supportive family. She is an advocate for genetic screening of infants that could detect Long QT syndrome. She hopes that sharing her story of being a young lady living a good life with heart disease will inspire and educate others.

Dr. Katherine Durham


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