ABOUT 1 IN 300 YOUTH SCREENEDare found at risk for SCA

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YOU CAN SAVE A YOUNG LIFE

Death from sudden cardiac arrest (SCA) can often be prevented through widespread education about this silent killer and committed implementation of primary and secondary prevention strategies.

EARLY DETECTION IS CRUCIAL.
PRIMARY PREVENTION

Youth are not adequately screened for heart conditions. In fact, the standard approach to patient health history and physical examinations misses about 90% of youth at risk for sudden cardiac arrest (SCA). Parent Heart Watch advocates for heart screenings in youth for the early detection of risk factors and conditions associated with SCA.

Because most heart conditions that can lead to SCA are not detectable with a stethoscope, a simple, noninvasive and painless test with an electrocardiogram (EKG or ECG) and echocardiogram, a comprehensive review of personal and family heart history and the proper assessment and follow-up of warning signs and symptoms are the best tools for primary prevention. Approximately 2% of youth that are heart-screened are diagnosed with a heart abnormality or concern, while 1% are diagnosed with a life-threatening heart condition. As children grow their hearts change and repeat evaluations are recommended through age 25. Find a heart screening now.

AEDs EVERYWHERE!
SECONDARY PREVENTION

U.S. News & World Report reported that 70% of Americans either don’t know or have forgotten how to administer CPR—an alarming statistic, given one quarter of Americans say they’ve been in a situation when someone needed CPR. And every minute’s delay in emergency treatment decreases the chances of survival by 10%.

Most occurrences of SCA in youth occur in public places. The increased availability of publicly accessible automated external defibrillators (AEDs) in schools and school-sponsored athletic events will dramatically increase the probability that youth will survive SCA. Knowing and properly executing the critically time-urgent links of the Cardiac Chain of Survival can help save the life of a youth in SCA.

Further, a written Cardiac Emergency Response Plan (CERP) is recommended for every school, sports team, camp and organization that works directly with children. A well-practiced CERP is a critical component of being prepared in case of a cardiac emergency.

Evidence shows that schools with AEDs and emergency action plans have a survival rate of up to 64% (versus the national statistic of a mere 8%). We must demand that AEDs are in our schools and youth centers, and that communities are effectively trained in the cardiac chain of survival. Ultimately, a mandatory and systematic national registry documenting the incidence of sudden cardiac arrest in the young is critical to the development of prevention protocol in youth health care. (See Sudden Death in the Young Registry tab below.)

For more information about the importance of sudden cardiac arrest prevention, view the Institute of Medicine’s “Strategies to Improve Cardiac Arrest Survival: A Time To Act.”


Parent Heart Watch encourages everyone, especially parents, educators and coaches, to learn CPR through one of these options:

WARNING SIGNS & SYMPTOMS OF A HEART CONDITION

  • Fainting (syncope) or seizure during or after physical activity
  • Fainting or seizure resulting from emotional excitement, distress or startle
  • Unexplained fainting or seizures
  • Chest pain or discomfort
  • Racing heartbeat, especially when the body is at rest
  • Unusual shortness of breath
  • Dizziness or lightheadedness during or after physical activity
  • Unusual fatigue or tiredness
  • Family history of heart disease
  • Family history of unexpected death during physical activity or seizure
  • Unexplained death of a seemingly healthy family member under age 50
  • Unexplained near/drowning or car accident of family member

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PREVENTION SOLUTIONS

HEART SCREENINGS

As many as 1 in 100 youth screened are found at risk for sudden cardiac arrest.

While the prevailing perception is that heart disease is primarily an adult disease, there are thousands of seemingly healthy youth who suddenly and unexpectedly suffer fatal or severely debilitating consequences due to undetected heart conditions.

 

“The standard approach to protect young adults is to do a physical examination and review their history…but that process misses over 96% of those at risk for Sudden Cardiac Death.”
Joseph Marek M.D., Medical Advisory Board, Parent Heart Watch

 

Most youth who suffer SCA have an undetected heart condition. A thorough family history and physical examination that includes an electrocardiogram (ECG or EKG) as a baseline test can help detect approximately 60% of the heart conditions that can lead to SCA. Further screening with an echocardiogram can often detect the balance of conditions beyond the scope of an EKG. Approximately 2% of youth that are heart-screened are diagnosed with a heart abnormality or concern; 1% are diagnosed with a life-threatening heart condition such as Hypertrophic Cardiomyopathy (HCM), Long QT Syndrome (LQTS), Wolff-Parkinson-White Syndrome (WPW) or Arrhythmogenic Right Ventricular Dysplasia (ARVD). See a comprehensive list of heart conditions that put youth at risk for SCA.

Frequently, the warning signs and symptoms in youth go undetected or are misdiagnosed, with fainting being the #1 sign of a potential heart condition. Those who work and live with youth must be aware of these signs and symptoms. If any exist, they should be reported to the youth’s physician immediately, with community caregivers and coaches also advised of the condition.

Medical professionals must be more acutely aware of the warning signs and symptoms of a heart condition, utilize the Pre-participation Physical Evaluation Form, the Pediatric Cardiac Risk Assessment Form, and, when symptomatic, immediately refer youth to a cardiologist for further evaluation. Parents are advised to use the evaluation form to assess their own child and bring to your child’s doctor for consultation, either during a well-child check-up or pre-participation sports physical, or sooner if warning signs, symptoms or family risk factors are present.

For more information, take a look at Parent Heart Watch’s Position Statement on Heart Screenings, and a statement on AEDs and Emergency Planning.

Below are some of the most common heart screening tests your doctor can order, or you can find them through a local heart screening program.

Electrocardiogram (EKG or ECG)

An ECG is a simple, painless, noninvasive test that measures and records the electrical activity of the heart. With each heartbeat, the heart’s natural pacemaker sends an electrical impulse that travels along a nerve pathway and stimulates the heart muscles to contract, pumping blood through the heart’s chambers and into the blood vessels. When the heart muscles relax, the heart refills with blood and the process starts again. The ECG records this activity on graph paper via wires that are connected to electrode patches with slightly sticky backings and placed on the chest, arms, and legs. The heart’s activity is recorded in up and down patterns labeled consecutively as P waves, QRS complexes, T waves and U waves. Irregularities in the patterns may indicate a problem with the heart.

Echocardiogram (ECHO)

An ECHO uses high frequency sound waves to display the structure, function and blood flow of the heart on a monitor screen without the use of x-ray. A colorless gel is applied to the skin on the area of the chest where the heart is located. A transducer, a small microphone-like device, is placed on top of the gel and moved across the chest to obtain images that the cardiologist wants to see. A computer transfers the information from the transducer to display an image of the heart on the monitor. The echocardiogram can detect structural abnormalities of the heart and show valve shape, motion, narrowing or leaking.

Holter Monitor

A Holter Monitor is a portable, battery-operated ECG machine that is worn in a shoulder harness around the neck, in a pocket, or on a belt. A Holter Monitor can help detect problems that may not be observed on a resting ECG. As with an ECG, there are electrodes attached to the chest. The heartbeats are recorded over a 24 to 48 hour period. Patients are usually told to keep a journal of their activities during the day.

If a child is diagnosed with a heart condition, there are many precautionary steps that can be taken to prevent the likely outcome of SCA including lifestyle modifications, medication, surgical treatments, and implanting a pacemaker and/or implantable cardioverter defibrillator (ICD).

CARDIAC CHAIN OF SURVIVAL

Why are the links in the Cardiac Chain of Survival so important?

Most occurrences of cardiac arrest in young people happen in public places. Immediate response to cardiac arrest with an AED can make the difference between life and death. According to the American Heart Association, in out-of-hospital settings when defibrillation with an AED is administered within the first 3 to 5 minutes of a SCA victim’s collapse, an average survival rate of 74% can be achieved. Considering the national average of EMS arrival is 6 to 12 minutes, bystanders are a critical bridge to survival when every minutes counts.

For every minute that a victim goes without defibrillation, his/her chance for survival decreases by 7-10%. Having easily accessible AEDs allows on-site individuals to deliver potentially life-saving defibrillation therapy quickly and effectively.

Rescuers must remember that an AED will not shock a victim if a fatal heart rhythm is not detected, so you cannot hurt a person by attempting to deploy an AED—the device is specifically designed for a non-medical person to use. What’s more important to understand is that if nothing is done for a cardiac arrest victim, he/she will most likely die. Equipping schools and other places where youth congregate with AEDs and training people how to use the technology properly can provide a youth struck by SCA another chance at life.

What You Need To Know

When SCA occurs, proper performance of the 5 vital links in the Cardiac Chain of Survival, which includes early defibrillation with an AED, can dramatically increase survival rates of cardiac arrest victims. Anyone can save a life when you follow these steps.

Cardiac Chain of Survival

1) Early Recognition of SCA: Recognize Sudden Cardiac Arrest
2) Early 9-1-1 Access: Call 9-1-1 and onsite first responders immediately
3) Early CPR: Start CPR immediately. Push hard and push fast on the center of the chest
4) Early Defibrillation: Use AED (defibrillator) to restore the heart to its normal rhythm
5) Early Advanced Care: direct EMS personnel to the victim

Liability Concerns

Good Samaritan laws have been passed in all fifty states that protect rescuers from civil immunity in cases where they volunteer to help. This legislation extends to the use of AEDs and applies as long as the rescuer is not paid to perform rescue skills as part of his job. Paramedics, EMTs, and emergency room personnel may not be covered by the same protection afforded to volunteer rescuers.

Good Samaritan laws differ from state to state. Some protect rescuers who use AEDs even if they never went through training while others require completion of a state or nationally recognized class. Other states not only protect the rescuer but also the physician who serves as medical director, the owner of the facility where the AED is located, and even the person or entity that provided training in AED and CPR skills. Since such variation exists, you should take the time to familiarize yourself with the statutes that apply to your state.

ICD/PACEMAKER

Treatment options for various heart conditions can include one of the following.

Implantable Cardioverter Defibrillator (ICD)

An implantable cardioverter defibrillator (ICD) is a small device, similar to a pacemaker that is implanted under the skin, often in the shoulder area just under the collarbone. An ICD senses the rate of the heartbeat. When the heart rate exceeds a rate programmed into the device, it delivers a small, electrical shock to the heart to slow the heart rate. Many newer ICDs can also function as a pacemaker by delivering an electrical signal to regulate a heart rate that is too slow. ICDs are typically used for fast arrhythmias such as ventricular tachycardia.

Pacemaker

A pacemaker is a small device that’s placed under the skin of your chest or abdomen to help control abnormal heart rhythms. This device uses electrical pulses to prompt the heart to beat at a normal rate.

Pacemakers are used to treat heart rhythms that are too slow, fast, or irregular. These abnormal heart rhythms are called arrhythmias (ah-RITH-me-ahs). Pacemakers can relieve some symptoms related to arrhythmias, such as fatigue (tiredness) and fainting. A pacemaker can help a person who has an abnormal heart rhythm resume a more active lifestyle.

For more information on ICDs or Pacemakers, visit:

Boston Scientific
Heart Rhythm Society
Medtronic
St. Jude Medical
Heartistry Videos

AEDs & PAD PROGRAMS

AEDs Everywhere!

Parent Heart Watch advocates for having AEDs in public places where youth congregate. This strategy is most effective through Public Access Defibrillation (PAD) programs. PAD programs are based on the premise that the first person on the scene of a cardiac arrest is in the best position of saving a life IF the rescuer is equipped with an portable defibrillator, also known as an AED.

PAD programs require AEDs to be placed near locations where people work or gather. However, simply distributing AEDs is not enough. Successful programs actively recruit and enable for as many people as possible to acquire the skills and confidence needed to respond appropriately during a cardiac emergency. The first responders in a PAD program are made up of lay rescuers – those with minimal first aid skills. They learn these skills during a basic four-hour CPR & AED course. They fervently hope that they never have to use their skills but do know that unless they respond appropriately in the event that their coworker, the person waiting in front of them in a movie theater line, the parent watching his daughter’s soccer match, or their loved one collapses, he/she will most likely die.

Sixth-grade school children with moderate training can learn to use an AED to save the lives of SCA victims almost as quickly and efficiently as professional emergency medical personnel.

Statistics of Early Defibrillation

For every minute that passes without defibrillation, a victim’s chance for survival decreases 10%. Public Access Defibrillation (PAD) programs can increase survival rates for out-of-hospital SCA victims from below 5% to as high as 50%. Estimates state that widespread public availability and use of automated external defibrillators (AEDs) could save as many as 50,000 American lives each year. On average, it takes EMS teams in the U.S. 6 to 12 minutes to arrive on the scene. Up to 95% of all SCA victims die. Documented AED programs have shown that survival rates can increase to 64% – 74% when an AED is applied within three minutes or less. For more information about Public Access Defibrillation Programs, visit Project ADAM.

What is an Automated External Defibrillator (AED?)

image_AEDLineup_1200x192
An AED is a medical device designed to quickly analyze the heart’s rhythm and safely deliver an electric shock, if needed. An AED will not shock someone if the heart rhythm is not life-threatening, so the user cannot inadvertently hurt the victim. Most AEDs guide its user through the rescue process with simple audible and visual prompts.

The heart has an internal electrical system that controls the rhythm of the heartbeat. Either a primary electrical heart condition or a structural heart condition which disrupts the heart’s normal electrical pathway can abruptly and without warning stop the heart from beating. These heart conditions can also cause the heart to beat so rapidly and chaotically that oxygen-rich blood flow to the brain ceases causing a person to lose consciousness in seconds. This rapid and chaotic heartbeat is called ventricular fibrillation (VF). Ventricular fibrillation is the most common cause of sudden cardiac arrest. Rapid treatment is critical and can be lifesaving. Unless an emergency shock using an AED is delivered to the heart to defibrillate it and restore its regular rhythm, death can occur within minutes. The use of an AED is the single most effective way to restore the normal rhythm of a heart quivering in ventricular fibrillation.

Download the toolkit to acquire, implement and maintain an AED program in your school or youth center as part of a Cardiac Emergency Response Plan.

CARDIAC EMERGENCY RESPONSE PLAN (CERP)

What is a Cardiac Emergency Response Plan?

The statistics are startling. In 2013, the American Heart Association reported 9,500 cases of out-of-hospital cardiac arrest in youth. What’s more, across the United States, even the best emergency medical services (EMS) systems can’t reach cardiac arrest victims for 3 to 5 minutes. Therefore, the actions taken by bystanders during the first few minutes of a cardiac emergency are critical. Prompt action can double or triple a victim’s chance of survival.

It has been proven that a carefully orchestrated response to cardiac emergencies will reduce death and disability in youth settings and help ensure that chaos does not lead to an improper or no response.

Simply put, a CERP is a written document that establishes specific steps to take in a cardiac emergency at school. Parent Heart Watch, in collaboration with 12 national health and safety organizations, developed a new Cardiac Emergency Response Plan for schools. A written and structured CERP is recommended for every school, sports team, camp and organization that works directly with children. A well-practiced CERP is a critical component of being prepared in case of a cardiac emergency.

Each individual site or venue should have its own CERP. The plan should be integrated into the local EMS response and an emergency communication protocol should be established. An Emergency Team should be identified and should include anyone trained in CPR and AED use. All equipment must be maintained and in good working order. The CERP should be practiced and reviewed with all personnel at least once a year.

Download the toolkit to support the implementation of a CERP in your school or youth organization.

SUDDEN DEATH IN YOUNG REGISTRY

The precise incidence of sudden cardiac arrest (SCA) in youth is presently unknown due to the lack of a mandatory and systematic national registry Various studies have been conducted on the incidence of SCA in youth, however, they have been based on different criteria and therefore produced varying results.

Parent Heart Watch with its members from across the country were instrumental in advocating for a consolidated effort to establish the incidence of sudden death in the young in the U.S., with the ultimate outcome of developing prevention protocol and standardizing these strategies in youth healthcare.

The Sudden Death in the Young (SDY) Registry began as a collaboration between the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). It is modeled after the successful Sudden Unexpected Infant Death (SUID) Case Registry, which currently tracks sudden unexpected deaths in infants up to age 1 in nine states.

In addition, the SDY registry builds on the work of state and local Child Death Review (CDR) programs. CDR teams have been reviewing unexpected deaths in a multi-disciplinary setting for more than a decade. These CDR teams are collecting comprehensive data on new cases of infants, children, and young adults who died suddenly and unexpectedly. That data is then submitted to the registry. Autopsy protocols are being standardized, and a DNA sample will be collected in some instances. The Registry is anticipated to identify and review 850 cases per year and obtain consent for the associated DNA sample on the case for about 250 cases per year.


Families of youth lost to sudden cardiac arrest in funded jurisdictions can support this study by consenting (at no cost) to bank DNA and participate in research genetic testing as well as possible diagnostic testing. Funded jurisdictions include: San Francisco, California; Delaware; Georgia; Minnesota; New Hampshire; New Jersey; Nevada; Tennessee; Virginia Tidewater Region; and selected jurisdictions in Wisconsin. Visit the Sudden Death in the Young Registry for more information.


Since developing the SDY Case Registry, information has been disseminated through National Institutes for Health and Centers for Disease Control and Prevention websites, in addition to the Michigan Public Health Institute’s National Center for the Review and Prevention of Child Deaths. Presentations have been delivered at over 30 national conferences including the National Association of Medical Examiners, Parent Heart Watch, Parents Against Mortality in Epilepsy, and the American College of Cardiology.

SDY

Visit the Sudden Death in the Young Registry for more information.

Pediatrics also published The Sudden Death in the Young Registry: Collaborating to Understand and Reduce Mortality, co-authored by Parent Heart Watch Board member Theresa Covington, MPH.

THANK YOU TO OUR PARTNERS
Abbott
Boston Scientific
Cardiac Science
Dominic A. Murray 21 Memorial Foundation
Firehouse Subs Public Safety Foundation
Louis J. Acompora Memorial Foundation
Mortara
One Beat CPR + AED
Physio-Control
Sudden Death in the Young Registry
Max and Victoria Dreyfus Foundation, Inc.

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