For Every Day That Passes - 20 Young Americans Will Pass As Well

I always find it amazing how people respond to me when I’m asked what it is that I do.   I get amazing feedback, especially from parents; how it’s very noble, right down to it’s a “no brainer”.  Then comes the big “BUT” called the debate of whether to screen or not to screen our youth for cardiac arrhythmias through electrocardiogram (EKG/ ECG).

I happened to tune into a radio show yesterday morning that was discussing preventive heart screening.  It stemmed from an article that was published in the Boston Globe that morning.  Please take the time to read it.

http://www.boston.com/news/health/articles/2010/03/02/heart_testing_back_in_spotlight/

Because I am intimately involved and knowledgeable about this insidious disease, I found it discouraging, let’s say, that we are even still debating this issue when there are programs out there, similar in scope to ours, but not quite so expansive as ours, that have ended the debate and found a solution to the problem and are doing something about it, while others feel quite comfortable sitting back continuing the debate and using a “rare” occurrence and cost-effective argument to base their comments on.  Let me remind everyone that 7,000 children are dying each year between the ages of 6-18.  That’s 20 children per day that are loved by their parents, families and communities and have meaning in this world; far from “rare” in my estimate with a price tag held over their heads because some are either not fully informed or are just not yet informed.  I understand that when it comes to the athletic child, people may be a bit apprehensive because, for some, sports it a ticket to college.

Our program is a voluntary, opt-in program.  In the areas in which we have hospital relationships, there are expedited appointments for those who test abnormal to quickly exclude the false positives and then quickly provide follow-up care for those who test as a true positive.  There are 300-400 public deaths each year; those more likely sports related.  That leaves 6,600 other children, sedentary children, vulnerable to this disease state.

What is a child’s life worth?  Easy answer for me;  INVALUABLE.  To others who are not yet informed or not fully informed or have no solutions to the problem, or don’t feel that 7,000 children dying every year is a problem, they use the good old “rare” occurrence rate and cost-effective argument.  Another article that came out in the New York Times yesterday addresses the cost-effective argument.

http://www.nytimes.com/2010/03/02/health/02heart.html?ref=health

I am not advocating for regulation or the mandating of preventive heart screening at this moment in time.  I agree with some opponents that it would overwhelm an already overwhelmed health care delivery system.  What I do, and will continue to do, is advocate a solution that is doable in the immediacy; a voluntary, opt-in, outside-the-traditional setting, alternatively funded, bringing preventive heart screening, including an EKG/ ECG, to the population.  We are doing it and it is working.

It just so happened, a physician called in to this radio show yesterday, not sure what specialty he is in, suggesting that “children dying at an alarming rate is “bunk”.  Apparently he doesn’t feel that the Heart Rhythm Society’s number of 7,000 is alarming.  That’s offensive to me.  It’s not 700, it’s not 7, it’s 7,000!  And if it were only ONE, I still find his word “bunk” offensive.  We are talking about children’s lives.  Even though he is a physician, I would categorize him as one of the “not yet informed” or “not fully informed”.  Some like to say that advocates, like myself, and programs out there providing preventive heart screening are promoting fear.  It is physicians like him who put “fear” into the minds of those who otherwise would consider preventive heart screening a “no brainer”; fear that they may never play sports again if they have this test, fear that a false-positive can cause chaos and stress and possibly bench an athlete from his sport for a brief period of time.  Isn’t it better than an athlete or child dying?  It seems more and more articles I read that oppose preventive heart screening are more about the sport than the child.  Does any of that sound right? 

Everyone, certainly, is entitled to their opinion.  I, having experienced the loss of a child, use this blog to express mine.  Preventive heart screening, including an EKG/ ECG, can and does saves lives.  It offers a LIFE sentence to a child who tests positive when there may have been a death sentence pending.   It offers the “FREEDOM OF CHOICE” for parents to receive a life-saving service that is not presently available to them in the standard of care in America.  This is an asymptomatic disease state.  In over 80% of the cases, the first symptom is death.  And because this disease state is genetic and hereditary, it may just save the life of another family member of the child who received the screening.  It’s a simple and easy test.

I know that no test is 100% positive.  Other screening tests, like mammograms, are not 100% but they are a part of the standard of care in America to avoid death from breast cancer.  Cardiac arrhythmias are the leading “silent killers” of our children.  It takes the life of more children than all the other childhood diseases combined.  Don’t our children deserve something?  Ask any parent who has lost a child from this, if they knew then what they know now, would they have taken this opportunity?  They now are the ones left behind with the insurmountable grief and pain that comes with the loss of a child and they are also the “Crusaders” who are out there fighting for everyone else’s children.

I’m done with the debate.  I’m moving forward.  I hope and pray that if a preventive heart screening opportunity comes to your community, that you take full advantage of it; embrace and support it.  There is a child’s life out there that depends on it!

Sitting Back as Life Goes By!

There has been a lot of press over the last month about the sudden death of Gaines Adams, Chicago Bear Linebacker and Jeron Lewis of the Southern Indiana basketball team — both public deaths and both deaths from an enlarged heart; a cardiac arrhythmia known as Hypertrophic Cardiomyopathy (HCM).  Also, both heart conditions went undetected until their first symptom: DEATH. 

It is extremely sad and frustrating that someone has to die, “UNPREDICTABLY”, in order for people to become aware and begin to realize that there is a serious problem in this country when our young population is dying at a rate of 20 per day/ 7,000 per year between the ages of 6 and 18.  Fortunately the public deaths, such as the ones mentioned above, are being reported.  There are approximately 300 to 400 deaths that occur in the public eye each year.  That tells you that 6,600 other young people are dying without notice, except to their families, friends and community who are left standing alone to cope with the loss, grief and the questions.

Another unfortunate circumstance is when these deaths do get reported, they get reported as “rare” instances.  I don’t think that 7,000 young people dying at a rate of 20/ day is rare.  The numbers I use here are not my numbers.  They are numbers given by the Heart Rhythm Society.

When a public death is reported, there begins the debate about preventive heart screening through the use of an electrocardiogram (EKG).  The public is being told that The American Heart Association does not endorse screening.  That preventive heart screening is not cost-effective, and a whole host of other excuses not to screen.  So the only option left is to dismiss even the idea and just let our children die?  I don’t think so.

First, I need to clarify a SERIOUS misperception:

The American Heart Association does endorse “Preventive Heart Screening”, I draw your attention to “Recommendations and Considerations Related to Preparticipation Screening for Cardiovascular Abnormalities in Competitive Athletes: 2007 Update ……” please see “Circulation – March 2007 page 1652, second column, “Conclusions” 17 lines down, seven words in, “On the other hand, the panel does not arbitrarily oppose volunteer-based athlete screening programs with noninvasive testing performed selectively on a smaller scale in local communities if well designed and prudently implemented.”  This position is also supported by the American College of Cardiology and Heart Rhythm Society.    

We at the Cardiac Arrhythmia Syndromes Foundation (www.SafeBeat.org) (a 501 (c) (3) not for profit) are saddened that this misperception continues to perpetuate itself.  We are also tired of hearing a cost-effective and utilization-of-resource argument to dismiss out of hand the value of proactive prevention.

Imagine, even after so many deaths, and one is too many, we continue to read negativity when it comes to preventive heart screening.  Our program, known as “SafeBeat”,  is a program that is voluntary, opt-in and free.  Where is the argument there?  We are doing something to save our youth.

EKG screening can, and does, save lives!  So I have to ask, why are people so comfortable sitting back and using a cost-effective argument while our youth are dying?  What is a child’s life worth?  Ask me; ask the thousands of other parents who have lost a child.

There is so much creativity happening in the modern “blog” world in order to get your message out there that it has me backing up sometimes and wondering how quickly time passes and that “simpler times” were just yesterday! 

Everyone has a catch phrase, a picture or a gimmick to capture one’s attention.  What did we do yesterday, before blogging, twittering, etc.?  I guess my answer to that would be that maybe we just didn’t reach as many people as we can now.

With all of that being said, I particularly, am grateful that we can/ do reach so many more people now through these avenues that to not take advantage of these modern times and educate people on what you “KNOW” can save young people’s lives just seems ludicrous. 

In what I deal with everyday, “creativity” almost seems like it should be a foreign thought when it comes  to the importance of the life, and sometimes, death of our youth; yet it is a necessity in order to get people’s attention.  No one likes to hear of an unexpected death of a child, or even a disease state that is taking our young people silently and unexpectedly at an alarming rate every day in this country, BUT it needs to be shared because in sharing that information, “LIFE” can be the pot of gold at the end of that rainbow; not some sort of monetary gain in this case.

 LIFE – that is my creative thought for today!  Sound absurd?  Just take a moment out of your busy existence today and think about what your life means to you and, more importantly, what the life of your children, or other children in your lives, means to you.  I don’t think it will take but just one moment!

My “creativity” for today is a picture of  “my famliy”.  We have experienced the loss of a child.  I don’t believe that there is anyone out there that would ever expect to lose a child unexpectedly from a “detectable and treatable” disease, yet it happens every day.  My mission is to change the statistics of that!  And I don’t believe that there is a parent or person out there who expects anything different for any child/ young adult than to be one of innocence, fun, activity, health, etc. – and that is exactly what it can be!  Through detection of “cardiac arrhythmia syndromes” comes treatment and “LIFE”!

These Are Our "Living" Children

All across America it is becoming commonplace that in most schools, sports facilities, airports, corporate offices, government buildings, etc., AEDs (Automatic External Defibrillators) are being placed within.  There is also a lot of movement going on toward CPR training and training in the use of these AEDs.  Why is that?

For those who may not be familiar with what an AED actually is, I will tell you that it is a life-saving tool for those who have suffered a sudden cardiac arrest.  It has the ability to check a person’s heart rhythm and recognize a rhythm that requires a shock.  To put it in simpler terms; it is a device that jump starts a heart back into “normal rhythms” and they have been proven to save many lives. 

Sudden cardiac arrest can take place at any age.  If a person is over the age of 35, the most common cause is coronary artery disease, but in our young people it is a whole different story!  In over 80% of the cases of sudden cardiac arrest in young people, “death” is the first symptom that something is wrong.  It then just becomes a “Tragedy”.  That unto itself is a tragedy, never mind what the family of the victim goes through after such an event.

Shockingly – Each month 600 young Americans die suddenly and unexpectedly from Cardiac Arrhythmia Syndromes. Because there are usually no symptoms leading up to the death, it is probably most likely that the cause of death will remain “undetermined”, which, in my personal opinion, is the worst clinical scenario a parent can receive when just having lost a young son or young daughter.  The reason for the “undetermined diagnosis”, I am told in discussions I have had across the country, is that with electrical problems of the heart, the heart can appear normal after death occurs.

Cardiac Arrhythmia Syndromes, which is a major disease state taking our youth, are electrical disorders of the heart that and are” life-threatening”.  This disease state is what is taking the lives of our young people silently, suddenly and so unexpectedly.  They are also genetic and hereditary and, more importantly, are “detectable and treatable” when diagnosed.  How does one diagnose a Cardiac Arrhythmia?  A 12-lead EKG/ ECG (electrocardiogram) is an effective medical device for detection.  It is designed to measure the electrical activity of the heart.  The sensitivity of the EKG/ ECG for detecting the leading cause of sudden unexpected death, known as Hypertrophic Cardiomyopath (HCM) , is 95%.  Once a cardiac arrhythmia is detected, because it is genetic and hereditary, if you test 1^st and 2^nd degree family members, nine (9) additional cases, on average, are found.

Right now we have AEDs attempting to do the job of saving the lives of those who suffer cardiac arrest.  Admittedly, there is a problem if the country is demanding AEDs be placed almost anywhere and everywhere.  Are our young lost in this?  I believe they are!  It’s hard to imagine a young adult in the prime of their life suffering sudden cardiac arrest.

 I, by no means, want to take away or diminish this life-saving device.  Unfortunately, though, a person has to go into sudden cardiac arrest first and hope they survive through the use of an AED.  There must be an AED within 4 minutes of someone suffering cardiac arrest in order to save their life.  For every minute that passes without defibrillation, a persons’ chances of survival “decrease” by 10%.  For simplicity, for every 100 people that go down, only 10 will ever get up.

Children over the age of 8 can be treated with a standard AED.  For children 1 -8, the American Heart Association recommends that attenuated, or long, narrow or sometimes tapered, pads must be purchased separately.  Also critical, a person attempting to use an AED must “FIRST” recognize the signs of sudden cardiac arrest and know where the AED is placed; in the best case scenario know how to use the AED and additionally, hopefully, know how to perform CPR. 

Cardiac arrhythmias which are causing sudden and unexpected death in our youth has been categorized as rare in most literature that your read.  However, it  is not “rare”; it is common and happening at a rate of 20 young people per day in this country between the ages of 6-18, 40 per day between the ages of 0-25.   That is not my figure; that comes from the Heart Rhythm Society and I believe that those statistics are underestimated because there is no reporting system that exists here in the United States.  I believe, and I am not alone in my beliefs, that many deaths, including some of the ones declared “undetermined”, are wrongly attributed to dry drowning, unexplained car accidents, eating disorders, possible drug use, etc.  The real tragedy here is that these arrhythmias can be “TREATED” when diagnosed.  For anyone to pass off the death of our youth caused by Cardiac Arrhythmia Syndromes because they believe it is “rare” is inexcusable and shocking; especially when there is cost-effective methods and preventive heart screening programs out there for detecting such conditions.

People, including some in the medical community, are depending on the false sense of security an AED brings.  Considering the statistics reported above; AGAIN, a sudden cardiac arrest episode needs to be recognized “IMMEDIATELY”, an AED has to be readily accessible along with the hope that someone close by, before medical help can arrive, be somewhat knowledgable in its use and that either that same person, or someone close by,  is also knowledgable in CPR in the event of  such a sudden cardiac arrest emergency.  In order to prevent young people from “going down in the first place”, some are simply hiding behind the words “rare” and “not cost effective” in order to dismiss what is happening every day all across this country!  Are our children’s lives not worth it?   Tell that to a parent who has just lost a seemingly healthy, active young son or daughter to this insidious and pervasive disease state; remembering that in 80% of the cases the first symptom is “death”.  When tragedy does strike, some just throw their hands up in the air and justify it by saying “nothing could be done” or it was an “act of God”; left  out there for the family to wonder “why or how this could have happened to their child” and live with the pain and grief that comes along with such a tragedy. 

We live in modern times with modern advances and if we have the ability to make a difference in this world in a cost-effective way through EKG/ ECG preventive heart screening programs which can diagnose a child with an arrhythmia and prevent that child from dying needlessly, or even going down in the first place, where is the resistance?

AEDs are a wonderful life–saving tool; more so is PREVENTIVE HEART SCREENING.  Let’s “screen hearts and save lives”!  Our youth deserve to live long, healthy, happy, productive lives.  It’s the reason we give them LIFE; not be cut short by a “detectable and treatable” disease!