Helping Patients Dependent on Heart Devices Live Their Best Lives

Researchers are also learning about the psychological impacts that devices have on patients and families and how to best help families cope.

For 11-year-old Sofia Montoya, learning to live her life with an Implantable Cardioverter Defibrillator (ICD) was, in a word, hard. Following a cardiac arrest while on her school’s playground in April 2016, the Stanford Children’s Health Betty Irene Moore Children’s Heart Center team diagnosed Sofia with long QT syndrome, a disorder of the heart’s electrical system that causes fast, chaotic heartbeats resulting in fainting spells, seizures or, in some cases, sudden death.

Sofia received an ICD to help regulate her heartbeat. If the device detects an irregular heartbeat it generates an electrical shock to restore a normal heart rate and rhythm. Sofia’s long-term outlook is excellent and she is able to live a full life, but is dependent on her ICD and medications to reduce the chances of an arrhythmia episode.

“At first, I didn’t know how to fit in [with an ICD] because I couldn’t really do anything,” says Sofia. “But now since I’ve been talking to my doctor I can do more things.  Now I don’t feel like an outsider anymore.”

Helping patients, like Sofia, and their families thrive physically and emotionally is the focus of a program at Lucile Packard Children’s Hospital Stanford, led by Lauren Schneider, PsyD, pediatric psychologist and Anne Dubin, MD, pediatric electrophysiologist.

“We hear many times that patients, parents and siblings feel alone in their journey [with these devices],” said Schneider. “These patients often have to limit physical activity so we focus on encouraging them and providing experiences each year that can help patients try something new and learn from others how they have moved forward on their journey.”

Through their annual Connecting event held in March, Schneider, Dubin and a team of providers created a special day focused on connecting these patients and families with one another, providing education and support.  Each year there is a different theme focused on one aspect of health and well-being.  Past themes have included nutrition or physical activity; this year’s theme was centered around music. “We have heard from many patients that music helps them cope and decided to explore this further,” said Schneider.

“My daughter came home and played her ukulele for days following the event!” said Shawna Montoya, Sofia’s mother. “Kids with these medical conditions aren’t necessarily going to directly express that they feel anxiety but engaging in calming activities like music can be really helpful. I thought that was a great addition this year.”

According to Dubin, pediatric patients with ICDs are known to have increased levels of anxiety and depression compared to other children with chronic diseases. “Through our work with this patient population we are learning about and researching parents of these patients who often suffer from post-traumatic stress disorder (PTSD) symptoms or true PTSD. This event also helps families recognize and learn about these issues.” Coping with physical restraints, stress and anxiety are addressed through clinical techniques like cognitive behavioral and biofeedback therapy as well as practices like yoga and meditation. “We have been working hard to understand the needs of our patients and their families,” said Dubin, who noted plans to expand research on the ways nontraditional mediums like music therapy and photography could affect patients’ ability to cope with their devices.

Schneider stresses the importance of families and patients connecting with one another as well, and Sofia validated that, noting that because of the Connecting event she, “found out that there are other kids like me and I don’t feel alone. They understand what I’ve gone through and how it feels to be left out.”

Being left out of participating in activities is one of the challenges that kids with ICDs and their parents face. “There is always another activity that comes up that she can’t do,” said Shawna. “As a parent it breaks your heart to see them go through that but being around other parents who understand the emotional side of that and all the other challenges we face, it helps create a community of support.”

When asked about her highlight of this year’s event, Sofia said “Beating my cardiologist at Guitar Hero and my nurse at Dance Dance Revolution!”

“Connecting helps make our medical team feel more like family than doctors,” said Shawna Montoya. “It’s special that the doctors and nurses can goof around with the kids in a non-clinical environment and I think that also helps with difficult conversations in clinic.  As parents, we’ve gotten to know Dr. Ceresnak [Sofia’s cardiologist] on a more personal level.  It helps build a stronger relationship between parent, medical team and patient.”

Support for Connecting Day is generously provided by the Alex Vibber Foundation.