Incidences of pediatric sudden cardiac death, or SCD, seem to occur more and more frequently. We hear of instances in the news at youth baseball games and high school sporting events across the country. The problem has garnered so much attention that New Jerseys Saint Barnabas Health Care System recently hosted the conference Saving Young Lives, devoted to creating awareness about pediatric SCD.
Sudden cardiac death is defined as a sudden unexpected death from a cardiovascular cause occurring within one hour of the onset of symptoms, says Mary Beth Kearney, RN, MA, CCRN, CPNP, a clinical nurse specialist in pediatric cardiology at Cohen Children’s Medical Center of New York in New Hyde Park. According to Kearney, who has lectured extensively and written articles on pediatric SCD, the overwhelming majority of SCD events in adolescents are arrhythmic, most often caused by primary electrical disorders and inherited arrhythmia syndromes, such as Wolff-Parkinson-White syndrome, long QT syndrome or Brugada syndrome. In arrhythmic events, there is an abrupt loss of consciousness and pulselessness in the absence of other conditions, she says.
Other conditions also play a part in pediatric SCD. One of the most common causes of SCD in the young is a disease called hypertrophic cardiomyopathy, says Denise Crosta, RN, MSN, APN, manager of pediatric cardiology at the Joseph M. Sanzari Children’s Hospital at Hackensack (N.J.) University Medical Center. HCM occurs in one in 500 individuals, but is often unrecognized or misdiagnosed. In those cases, the presenting symptom could be sudden death.
Timing is EverythingCheryle Aizley, RN
Because these underlying conditions may not have been diagnosed, the problem only becomes known when the child collapses. In that instance, swift treatment is the only option and CPR becomes invaluable, says Cheryle Aizley, RN, APN-C, advanced practice nurse in pediatric critical care, pediatrics and pediatric sedation at Children’s Hospital of New Jersey at Newark (N.J.) Beth Israel Medical Center. After being transported to the hospital, an interdisciplinary team springs into action. The nursing, medical, respiratory therapy and pharmacy staff work together to stabilize the child and optimize his or her breathing and circulation, Aizley says. The team works together with the family and pediatric cardiac subspecialists to determine the cause and optimum treatment of the childs condition. This generally includes electrocardiogram, echocardiogram, electroencephalogram, lab testing, a full health and family history and any other tests or treatments that the childs condition requires.
Similarly, the pediatric ED at Hackensack works closely with first responders in the community to ensure a seamless transition from the field to the ED, Crosta says. Once stabilized, the child would be moved to the pediatric ICU for further treatment and monitoring. The physicians, nurses, respiratory therapists and the rest of the healthcare team, which includes pediatric social workers and child life specialists, are specially trained in the needs of the critically ill child. Any hospitalization can be traumatic, but an SCD event is life-altering, necessitating additional psychosocial support for the patient, family and sometimes the healthcare team, she says.
Kearney agrees that optimal treatment comes from an interdisciplinary team of caregivers who treat not only the illness but also its psychological impact. Cohen Children’s has a dedicated pediatric ED, a pediatric ICU and a pediatric cardiology department that forms a multidisciplinary team to investigate the probable cause, treatment options and screening of the whole family where indicated, she says. Emphasis is placed on the medical and psychological implications of such a catastrophic and life-changing event, which affects both the patient and the entire family.
Staying In the Know
To educate the community, health professionals must be in the know when it comes to pediatric SCD. More than 350 participants attended the Saint Barnabas conference, which was a joint effort between four affiliates of the health system, including the Children’s Hospital of New Jersey at Newark Beth Israel Medical Center.
Programs like the hypertrophic cardiomyopathy conference or the APN conference held at HUMC or the one held by Saint Barnabas affords attendees the opportunity to learn the information, ask questions as needed and have points clarified, Crosta says. In addition to these programs, departmental grand rounds is another educational source. At HUMC, sudden death and related topics have been presented at grand rounds on numerous occasions.
The department of pediatric cardiology at Cohen Children’s provides education to the staff and the community on SCD. Andrew Blaufox, MD, director of electrophysiology, has lectured extensively to the staff in the hospital and to community pediatricians in Queens, Nassau and Suffolk counties on the topic of pediatric SCD, Kearney says. I myself have lectured on this topic to school nurses in Nassau and Suffolk, to the Nassau and Suffolk chapter of NAPNAP, as well as nursing grand rounds in the childrens hospital.
Although it seems pediatric SCD is becoming more and more prevalent, a child suffering from the condition is uncommon, Aizley says. Sudden cardiac death is actually very rare in children, she says. Only about 500 to 1,000 cases are reported annually. To help curb the number of incidences, ensuring that parents, teachers, coaches and other adults in the community are aware of pediatric SCD has become crucial to pediatric hospitals.
Saint Barnabas Health Care Systems Playing with Heart program offers free pediatric cardiac screenings based on American Heart Association recommendations to young athletes ages 6 to 18 throughout New Jersey. Staffed by pediatric cardiologists, each screening includes ECG testing of players and provides their parents or guardians with immediate results. If initial results identify a need for further testing, players are referred to their primary care provider for a referral to an appropriate specialist. In addition, the health system offers a CPR Training Center with more than 200 affiliated instructors, some of whom are nurses, who provide CPR training at the request of schools and community groups and at health fairs.
Cohen Children’s Medical Center provides all parents and caregivers of infants in the hospital training in CPR and offers a baby-sitting program that teaches infant and child CPR to youth in the community. The North Shore-LIJ Health System has an Office of Community and Public Health Education that coordinates programs for athletic coaches in terms of prevention of injuries and use of CPR and AED. Pediatric cardiology is involved in EKG and echo screenings at various middle schools and high schools throughout Nassau and Suffolk, Kearney says.
Screening Leads to Prevention
Prevention of SCD is a complicated task that involves several areas: screening during a health history, restrictions on sports participation, patient-specific therapy for members of high-risk groups and the development of organized rescue programs, Kearney says. Patient and family history is critical for diagnosing possible etiologies of diseases that cause pediatric sudden cardiac death.
A family approach to protecting our children is the philosophy behind the Gregory M. Hirsch Hypertrophic Cardiomyopathy Center at HUMC, Crosta says. The center is committed to providing individualized care, treatment and support to patients and families with HCM. Experts in cardiology, genetics, radiology, pathology, electrophysiology, child-life and social work services use an interdisciplinary approach to offer optimal patient care, she says. The center is the first facility established in the area to screen families for HCM. This unique approach, Crosta says, enhances care and communication between medical staff and families communication that could save a young persons life.