Sudden Cardiac Arrest (SCA) is the leading cause of death in the U.S., taking the lives of 600,000 annually, according to the Institute of Medicine. But what most parents don’t know is that SCA is the #1 killer of student athletes and the #2 medical cause of death among youth under 25.
The precise incidence of SCA in youth is presently unknown due to the lack of a mandatory and systematic national registry of SCA/SCD in youth. Various studies have been conducted on the incidence of Sudden Cardiac Arrest in youth, however, they have been based on different criteria and therefore produced different results.
While there are many competing estimations on the number of sudden cardiac arrests annually, the American Heart Association reports that 9,500 youth are affected by what the National Heart, Lung and Blood Institute calls a critical public health issue. One student athlete dies every three days – it’s the leading cause of death on school campuses.
SCA is not a heart attack – it’s the sudden onset of an abnormal and potentially fatal heart rhythm that causes the heart to beat ineffectively or not at all. The underlying cause of SCA can be a heart condition you’re born with (often inherited) and/or can develop as young hearts grow. SCA can also be triggered from a viral illness, or a blow to the chest from an object or a person.
The first symptom of SCA is often death, either because the warning signs of an underlying heart condition were not recognized or help was not administered within minutes of the event. In fact, up to 95% of SCA victims die because there was a delay in emergency response.
Of the leading causes of youth death (accidents, suicide, homicide, cancer and heart conditions), sudden cardiac arrest is the only one that can be prevented through primary and secondary prevention strategies.
The question is, if we can prevent the tragedy of losing a child, why don’t we?
Sudden Cardiac Arrest is the condition in which the heart unexpectedly ceases to function. Often, this is because of irregular and rapid quivering of the heart’s lower pumping chambers (ventricles) called ventricular fibrillation. When this occurs, blood stops flowing to the brain and other vital organs, causing loss of consciousness or seizure-like activity in seconds.
If not treated within minutes, SCA results in death. The normal rhythm of the heart can only be restored with defibrillation, an electrical shock that is safely delivered to the chest by an automated external defibrillator (AED).
Sudden Cardiac Arrest is NOT a heart attack, though it is frequently the outcome of an underlying heart condition. It can also occur secondary to other conditions such as impact to the chest, heat stroke, asthma, drowning, electrocution, allergic reaction, or medication. SCA is indiscriminate as to age, race or gender and kills over 450,000 out of hospital. Victims of SCA may never experience any warning signs. Of these victims, the outcome is often sudden death for thousands of children, teens and young adults.
Cardiovascular disease is the second leading medical cause of death in children and adolescents in the United States.¹ And, SCA is the leading cause of death in student athletes during sports and exercise, with approximately 9,500 youth suffering out-of-hospital cardiac arrest each year.
The true prevalence of sudden cardiac death (SCD) in youth, however, is unknown due to the lack of a mandatory and systematic national registry. Parent Heart Watch strongly advocates for the establishment of such a registry to provide more accurate data that will motivate new research and strategies that will lead to SCA and SCD prevention.
¹ Center for Disease Control (CDC) National Vital Statistics Report for 2005, published April 2008, Volume 56, Number 10
Boston Scientific is dedicated to providing patients and their families with information regarding cardiac rhythm management therapy so they can make informed decision. To learn more, visit www.lifebeatonline.com or call toll-free (800) CARDIAC (227-3422).
Structural / Functional Causes
Arrhythmogenic Right Ventricular Dysplasia (ARVD) – is a form of cardiomyopathy in which the heart muscle of the right ventricle is replaced by fatty-fibrous tissue. The scar tissue interrupts the normal smooth sequence of electrical activity that causes the heart muscle to contract, leading to arrhythmias. The weakened muscle will stretch, producing an enlarged right ventricle, which may not pump as effectively as a heart without ARVD. ARVD is often inherited.
Coronary Artery Abnormalities (CAA) – is an abnormality or malformation of the coronary artery, a blood vessel that supplies blood to the heart muscle. This condition is present at birth, but can be silent for years until very vigorous exercise is performed. During exercise, blood flow to the heart muscle can be impaired and result in ventricular fibrillation.
Dilated Cardiomyopathy (DCM) – is the most common form of cardiomyopathy and occurs when heart muscle tissue is enlarged and stretched, making it difficult for the heart to function. DCM usually follows a viral infection.
Hypertrophic Cardiomyopathy (HCM) – is the second most common type of cardiomyopathy and results in excessive thickening of the heart walls, usually on the left side. The thickened heart muscle can block blood flow out of the heart and can increase the risk of ventricular fibrillation. In over half of the cases, this heart disorder is hereditary. HCM is the most common cause for sudden cardiac death in athletes in the United States.
Kawasaki Disease – is characterized by inflammation of blood vessels throughout the body including the coronary arteries of the heart. It often begins with a persistent high fever greater than 102°F, often as high as 104°F, which typically lasts at least 5 days and does not usually go away with normal doses of acetaminophen (Tylenol) or ibuprofen.
Marfan Syndrome – is an inherited abnormality of the connective tissue (ligaments and tendons) in the body. The wall of the aorta, the main artery from the heart, can become weak and rupture, especially during exercise. Often, affected people are tall and thin with long arms, legs, fingers and toes.
Mitral Valve Prolapse (MVP) – is a disorder that affects one of the heart’s valves — the mitral valve. The mitral valve doesn’t close properly allowing backward leaking of blood from the heart’s chamber. This may predispose some people to endocarditis, an infection of the heart valves and parts of the inside lining of the heart muscle, due to bacteria that adhere to the valve from dental work.
Myocarditis – is an inflammation of the heart muscle caused by either a viral, bacterial or fungal infection. It is often caused by the Coxsackie virus. It causes weakening of the heart’s pumping action and decreases its ability to supply oxygen-rich blood to the body. Most people recover from viral myocarditis with no ill effects. It is better not to participate in sports when a fever, chills and muscle aches are present, or symptoms which are indicative of a bad cold.
Brugada Syndrome – is an abnormality of the heart cells that disrupts the electrical activity in the heart and can cause life-threatening heart rhythms.
Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) – is characterized by exercise or stress-induced ventricular arrhythmias in which the heart’s lower pumping chambers go into very rapid and uncontrolled rhythms that do not pump blood effectively.
Long Q-T Syndrome (LQTS) – is a disturbance of the heart’s electrical system. A genetic mutation causes a defect in the heart cells, called ion channels, which then prolongs the time the heart takes to electrically recharge after each heartbeat (known as the QT interval). LQTS is usually inherited. In other cases, LQTS can be caused by certain medicines, toxins, electrolyte disturbances, or other forms of heart disease.
Wolff-Parkinson-White Syndrome (WPW) – is a condition in which the normal electrical signals in the heart travel along an extra, abnormal electrical pathway. This condition can create a “short circuit” in the electrical system and lead to abnormally fast heart rates (tachycardia). WPW is sometimes inherited.
Commotio Cordis – is a condition that causes cardiac arrest if a sudden blow to the chest occurs at a critical point when the heart is electrically re-charging. It can occur with an impact of very little force. It is usually caused by a baseball, lacrosse ball, or a hockey puck despite the use of a chest protector. Chest protectors are designed primarily to protect a child from soft tissue damage and bone injury on impact; not as protection from the potentially fatal heart rhythm that can also occur as a result of impact. Wearing a chest protector, thus, creates a false sense of security. Commotio cordis is the second leading cause of death in young athletes while playing baseball, usually occurring between the ages of 7 and 16. Every child is vulnerable. Read more from the National Operating Committee on Standards for Athletic Equipment (NOCSAE).
Drugs or Stimulants
Even someone with a completely normal heart can develop ventricular fibrillation and die suddenly due to drug or stimulant use, which includes performance enhancing drugs, high-caffeine energy supplements or diet pills.
Every living thing in this world is made of cells. Every cell has genetic material (DNA or RNA). Each strand of this genetic material has many genes. Each gene carries a specific code to make things (like how to make another one of you).
Genetic testing is the use of a laboratory test to look for genetic variations associated with a disease. The results of a genetic test can be used to confirm or rule out a suspected genetic disease or to determine the likelihood of a person passing on a mutation to their offspring. Genetic testing may be performed prenatally or after birth. Ideally, a person who undergoes a genetic test will discuss the meaning of the test and its results with a genetic counselor. Visit the National Society for Genetic Counselors for more information.
Genetic Testing and Sudden Cardiac Death (SCD)
One of the first things a parent worries about after one of their children is affected by cardiac arrest is whether or not their other children are also at risk. Genetic counseling can help address this concern. Genetic testing is not able to determine all the causes of cardiac arrest but many heart conditions that cause SCD are identifiable.
When seeking a medical laboratory for genetic testing, it is important to ensure that the laboratory chosen is a Clinical Laboratory Improvement Amendments (CLIA)-approved laboratory. The Centers for Medicare & Medicaid Services (CMS) regulates all laboratory testing (except research) performed on humans in the U.S. through CLIA.
The process of post-mortem genetic testing includes contacting the medical examiner to request that a blood or tissue sample from the autopsy be sent to the genetic laboratory for examination and testing. The genetic laboratory may also want blood samples from the parents as well. It is important to have a physician’s order for the testing because it will be necessary for the laboratory to send the results to the physician. The genetic laboratory will often send a special kit with which to collect the blood samples and for mailing the blood samples to the laboratory. Depending on the tests ordered, it may take weeks to months to receive results.
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.
Genetic Information Nondiscrimination Act (GINA)
The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a Federal law that prohibits discrimination in health coverage and employment based on genetic information.