Young Hearts with ICDs: The 2008 Annual Conference

The care of patients goes well beyond recommendations, medications, or interventions. Once a year, at our annual “Young Hearts with ICDs” conference, we get a better glimpse of what our patients and families experience on a daily basis, sharing in their setbacks and triumphs. Inevitably, we walk away better health care providers and better people. As one young woman stated, “This conference has been such an amazing and uplifting experience for me. Every year there is always someone that I connect with in a new way, who invariably impacts my life simply by sharing our stories, our hurts, our successes and our laughter. But what I love best is that the people have become my family. I look forward to this reunion every year.” Our annual Young Hearts with ICDs conference was organized to provide support for our young patients with life-threatening heart disease who have undergone placement of ICDs. This year’s conference, held in Iowa City on August 23, was the fifth annual meeting, and brought 136 patients and families together from across the U.S. (Iowa, South Dakota, Nevada, Wisconsin, Illinois, Missouri, and Nebraska) to share their stories, learn more about their disease and ICD, and develop strategies to live a more normal life. Though still accounting for less than 1% of all ICDs implanted, the use of ICDs in pediatric patients has been increasing over the past few years. This relatively new population of ICD recipients has brought with it new challenges for patients, families and their medical providers. One of the primary goals of our pediatric EP program at the University of Iowa is to provide support for our patients and families. We feel that this conference is a crucial component of this support system. We place a high priority in early intervention to address the psychosocial issues facing the young ICD population when coping and adjusting to a device implant. Children and teenagers have unique psychosocial issues due to their developmental stage. They now have been diagnosed with a life-threatening illness, have a device in their chest, and have restrictions placed on them that they feel place them on the fringe of their peer group. They may feel isolated, fear peer rejection and often have an altered body image, which often leads them to regret their decision to undergo ICD implantation (many of whom were hesitant to implant in the first place). Even if they initially felt comfortable with ICD implantation, an ICD shock (appropriate or inappropriate) or the fear of shock can have dramatic effects on their sense of well-being. Many young ICD patients fear exercise and often tell us they are afraid of being shocked at school or in front of their friends. They also share their concerns about dating, intimacy, marriage, and childbearing. All these worries can contribute to anxiety, which is often suffered in silence. With this in mind, we stress to our patients and families the importance of meeting with a pediatric psychologist prior to ICD implantation to address these needs and to help develop a psychosocial safety net should problems arise. Patients are not the only ones who have to adjust to living with an ICD — their families and many friends share in their burden. Many of the families who attend this conference have lost loved ones, share their family member’s life-threatening disease (which they may have passed along to their child), or struggle in helping their child/spouse/sibling/parent cope with their disease state. It is our hope that our ICD conference provides an outlet for patients and their families to be with people who face the same challenges. The feedback we receive from our patients and families is best reflected in a quote from one of our parents: “Just wanted to take a moment to thank you and everyone else who helped coordinate the wonderful conference last weekend. I have thought about it every day this week. Especially the young couple who are trying to decide if they want an ICD for their five year old, and also the teenager that has had his ICD for three weeks. I have been praying for everyone. It was good to see people we met last year and also meet new ones. Everyone's story is so unique and painful. For us, it's a reminder that our personal situation is not so bad after all. Thank you for providing this supportive outlet for us and our children.”

The role of the conference can best be summarized by our mission statement, written by two of the ICD patient attendees: We are a patient advocate group offering support and information related to the heart conditions and medical devices that affect our lives and the lives of our families. We exist to address the unique needs these conditions create and support the commitment it takes to maintain the devices that sustain our health. We work in partnership with our medical providers, relying on their collective specialized knowledge to support our mission. We encourage new ICD recipients and their families to participate in the group at whatever level is appropriate and comfortable for their situations.

This conference offered breakout sessions for: • Teen teambuilding (ages 11-18 years) • Parent perspectives • Young men with ICDs • Young women with ICDs

Educational discussions during the conference included: • Cardiomyopathy (moderator: Abhay Divekar, MD) • Genetic testing (moderator: Laura Grussing, RN, BSN) • ICDs and sports (moderator: Ian Law, MD) • The ICD’s role in congenital heart disease (moderator: Nick Von Bergen, MD) • Long QT syndrome (moderator: Macdonald Dick II, MD) • A CPR refresher course (moderator: Lance Heern) • Remote monitoring (moderators: Guidant and Medtronic) • Tips on joining Facebook’s “ICD Kids and Young Hearts” page (moderators: Dani and Bret Engelkes) With the help of the attendees, we have been pleased to see the transition of the conference towards more patient and family control. It was one of the attendees who suggested this year’s keynote speaker, Michaela Gagne (highlighted in the August edition of EP Lab Digest), an ICD recipient who has advocated for cardiovascular awareness through her roles as a spokeswoman for SADS, Parent Heart Watch and even as Miss Massachusetts. Michaela discussed the impact that LQT syndrome and an ICD has had on her life. As an all-state, multiple sport athlete, Michaela and her family were initially faced with a difficult situation when she was suddenly restricted from competitive sports. Michaela had to adjust to a new lifestyle despite feeling healthy. Her parents had to adjust to the fear of possible sudden death. Michaela has transitioned wonderfully to a new phase in her life, and has used her life story to help support others. Some other previous keynote speakers over the years have included Matt Noble, author of the book One Beat at a Time, Living with Sudden Cardiac Death, a story of his life as an ICD recipient, and Kelly Perkins, author of The Climb of My Life. Kelly had an ICD placed before a heart transplant, and since the transplant has climbed many of the highest mountains in the world. According to one of our young male patients, “It has been great to be a part of this group of young ICD recipients. Meeting new people with the same condition has really helped me to cope and become an advocate for ICD support (groups).” A young female patient said, “The conference isn’t just about having an ICD… We are living full lives, going to college, traveling, having children. We can share the difficulties and humorous moments that having an ICD can add to a normal life.” The conference is sponsored by the University of Iowa in conjunction with the University of Iowa Children’s Hospital, and would not be possible without the generous support of Boston Scientific, Medtronic and PGx Health. The sixth annual Young Hearts with ICDs conference is scheduled for August 15-16, 2009, in Iowa City. For more information about this conference, please contact Jean Gingerich at jean-gingerich@uiowa.edu.