Heart Patients Bond Over Their Life-Saving Devices

Treating pediatric ICD patients and their parents through family-centered care

For young kids following or at risk of sudden death, receiving an implantable cardioverter-defibrillator (ICD) can be lifesaving. If the device detects an irregular heartbeat, it generates an electrical shock to restore a normal heart rate and rhythm, preventing sudden cardiac death. But living with the device can take a toll on a person’s emotional and mental health.

“In a recently published paper, we found that our pediatric patients experience depression and anxiety at rates of 20 and 25 percent, respectively,” said Stanford Children’s Health pediatric psychologist Lauren Schneider, PsyD.

The stress does not stop there. Psychologists and physicians within the Betty Irene Moore Children’s Heart Center are also researching the impact of cardiac events on parents and siblings of heart patients, many of whom suffer from post-traumatic stress disorder (PTSD) symptoms.

“Often, parents bring up concerns with their own emotional health and the challenges in taking care of themselves when they are so focused on their child,” said Stanford Medicine Children’s Health pediatric electrophysiologist Anne Dubin, MD. “Parents’ rates of PTSD far exceeded the rates of PTSD in the patients.”

To help kids and their families thrive both physically and emotionally, Lucile Packard Children’s Hospital Stanford has created Connecting, an annual event focused on helping patients and families learn about their heart condition and what it means to live with, or parent a child with an ICD. “It allows them to realize they are not alone in their journey, and have fun with their health care team and each other,” said Dr. Schneider. 

The Connecting event, led by Dr. Dubin and Dr. Schneider, also provides the opportunity for ICD patients and families to connect with one another so that they can share resources, and gain support from one another.

Kimberly Torres was 11 years old when she received her first ICD and was devastated to learn she had to stop playing soccer and participating in dance recitals. She began to isolate herself from family and friends. Through the support and resources provided by Packard Children’s, the now-20-year-old is an energetic junior in college, working part time, and sharing her own experiences with others about the different ways she has adapted and moved forward with her life. 

“When I was diagnosed with catecholaminergic polymorphic ventricular tachycardia (CPVT), my emotions were high, and I placed myself in my own little bubble,” said Kimberly. “Now that I am older, I’ve accepted that I have a rare heart disease, and with the support from my family, doctors, and meeting others who are just like me, I realize that I am not alone facing these problems. I attend events like this year’s Connecting 2020 to let others living with ICDs know that they are not alone or without support and that you can live a full and happy life.”

Mary Nopachai is a parent to a child living with an ICD. “Meeting other ICD families and hearing their stories and struggles inspires me to pursue my mission of advocating for initiatives that would improve outcomes for sudden cardiac arrest, such as increasing community CPR training,” said Nopachai. “For my son, he enjoys attending the Connecting events for the activities, raffles, delicious food, and seeing the other children like him.”

Managing heart and soul

Looking out for patients’ and families’ mental health is a key part of Packard Children’s Hospital’s commitment to family-centered care.

“I often tell patients and families in clinic that their physician checks on their heart, their nurse practitioner does their device check, and that my role is to check on the rest of them, their emotional, social, academic and behavioral functioning,” explained Dr. Schneider. “With information we have obtained from recently published research on our patients’ needs, we are beginning to examine new ways of educating our patients about their heart condition, device, and medical treatment, as well as offering resources to parents.”

“My son’s care team has addressed both the physical and mental conditions associated with having a child living with ICD—they treat the whole person,” Nopachai said. “My family and I are truly grateful.”