“It’s a good idea to be your own health advocate, especially as you get older,” says 19-year-old Abigail Gonzales. This realization was instrumental in helping Abigail get the treatment she needed for tachyarrhythmia, a heart condition that caused her heart to race uncontrollably, and without warning.
In researching heart experts with her mom last year, Abigail read about Kara Motonaga, MD, a pediatric cardiologist on the Pediatric Electrophysiology and Arrhythmia team at Lucile Packard Children’s Hospital Stanford, and called the heart center clinic to ask to see her. Dr. Motonaga remembers being impressed with how Abigail took the initiative to reach out herself. “It’s not unusual for parents to do their own research and reach out to me, but it’s unique that an 18-year-old did this,” says Dr. Motonaga. “Seeing a patient do that herself was really refreshing.”
An impairing condition
The first time that Abigail felt symptoms of the tachyarrhythmia was at a high school dance. At the time, she thought she was having a panic attack: a suddenly racing heart, a deluge of sweat, and being overcome with dizziness. When the same thing happened again, her mother took her to a local emergency department, where “they tried every medication you can think of, but nothing worked for the longest time,” Abigail remembers. As doctors worked all night to find a medication to bring down her heart rate, they explained that she had tachyarrhythmia.
Soon after, Abigail saw a heart specialist in Sacramento, who had her try several kinds of medications. While some medication regimens brought down her heart rate during episodes, they didn’t stop the episodes themselves from happening. Neither did two catheter ablations, which are minimally invasive catheterization procedures that can cure tachyarrhythmias.
The episodes of tachycardia landed Abigail at the Emergency Department (ED) on a regular basis for several years.“It’s like you’re running really, really fast and then you stop, but your heart rate won’t come down,” she says. Along with a racing heart, Abigail sometimes got dizzy and fainted. Usually, her feet and fingers felt frozen because her heart was racing so fast that blood wasn’t getting to them. “It’s really scary not having control over your body like that,” she says.
It got to the point where Abigail felt like the episodes were happening constantly, especially when she danced—an activity she loved to do. “I was tired of taking meds all the time, and it was frustrating that surgeries weren’t working,” she says. “That’s why I decided to explore other ways to fix it, and that’s when I found Dr. Motonaga.”
A different approach
When they met at Lucile Packard Children’s Hospital Stanford, Dr. Motonaga explained to Abigail and her mother that there are different kinds of tachyarrhythmias, and that Abigail’s wasn’t the typical kind seen in children and adolescents. “But as a large referral heart center, we see a handful of patients with her specific type each year, so our electrophysiologists are experienced at ablations for patients like her,” says Dr. Motonaga. This experience gave Dr. Motonaga and her electrophysiology team insight into what they could do differently to improve the chances of success with another ablation. The previous ablation attempts had been done under general anesthesia, which causes patients to be deeply asleep. The problem is that when someone is that relaxed, the fast heartbeat may not happen. Or an episode may not last long enough for the doctor to be able to precisely pinpoint its location in the heart, making it difficult to target the right spot with the ablation catheter.
Dr. Motonaga recommended an approach that is used more commonly in adult patients than in pediatric patients. The technique requires keeping a patient awake using what’s called conscious sedation. A medicine makes the patient drowsy but still awake with just the right balance between being responsive but not too uncomfortable. “The whole approach to treatment we have is unique to each patient,” says Dr. Motonaga. “We can assess a patient’s condition and determine whether the procedure’s likelihood of success is higher under general anesthesia or conscious sedation, and then make individualized decisions in order to do procedures the best way for each person.”
Abigail freely admits that she was frightened to have the procedure while awake, but she was determined to try it. “I really wanted the episodes to be done and over with, so it was the obvious choice for me, since the alternative was living with medication that wasn’t really working,” she says. It helped that she felt Dr. Motonaga took the time to explain what would happen. “I wanted to know everything that could go wrong and what could go right, and to learn about the different outcomes. My mom raised me to be inquisitive and ask lots of questions!”
Back to her old self
Performing an ablation procedure under conscious sedation on a young adult requires a full team effort, in addition to the electrophysiologist performing the ablation. “Our goal is to make the experience as comfortable and nontraumatic as possible for patients under the circumstances,” explains Dr. Motonaga. A cardiac anesthesiologist talked with Abigail throughout the procedure to monitor her level of pain and anxiety and to adjust the level of medications accordingly. “It was like I was half awake, half asleep, and like I was dreaming but I wasn’t completely disconnected from the reality,” she says. A child life specialist stayed by her side, close to her face, the whole time and coached Abigail through it, giving her encouragement, such as, “It’s OK. You can do this.”
The team was able to generate the episodes of fast heartbeats during the procedure, and they put a special catheter inside her heart and moved it around to find where the abnormal electrical signals were coming from. Then, they performed the ablation using radiofrequency energy through the catheter at that exact spot. In order to check whether they had successfully ablated the troublesome tissue, they stimulated her heart again to try to induce an episode. When it didn’t happen, they knew they’d gotten rid of the right tissue.
Abigail hasn’t had an episode since and is symptom free, so she’s considered cured. She’s working through some feelings of anxiety, though. “It’s still scary to work out strenuously because I worry, what if it happens again? Maybe it didn’t work. But I’m getting less anxious, and I think the third time’s the charm.”
Abigail is grateful that she didn’t give up on finding a treatment that worked and that she can start the next chapter of her life symptom free. “If I had any advice, I’d say: Don’t be afraid to ask questions or fight for the treatment that is best for you. There’s always a doctor out there who will listen to and fight alongside you.”
