Was It The Heart?

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Was It The Heart?

• Partnering with Child Death Review
• to Help Unravel the Mystery

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Young hearts should not stop suddenly.
But they do.
Every day.
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Parent Heart Watch Mission
Parent Heart Watch is the national voice
protecting youth from Sudden Cardiac Arrest (SCA)
and preventable Sudden Cardiac Death (SCD).
Parent Heart Watch leads and empowers others by
sharing information, educating and advocating for
change. 
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Sudden Cardiac Death in youth is not rare.
Its true incidence is unclear.
Janet Zilinski, age 11, suffered SCD after
jogging around the football field.
Kiki McBride, age 14, suffered SCD while trying
out for the girls basketball team.
Justin Bonafide, age 9, suffered SCD while
running in his yard.
Dominic Murray, age 17, suffered SCD during an
open gym pick up game.
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Statement of Need
It is critical to establish a National Case
Registry for systematic and mandatory reporting
of Sudden Cardiac Deaths in youth to a central
national database by credible sources such as
? Coroners ? Medical examiners ?
Medical facilities
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National Vital Statistics Report Volume 56,
Number 10 Data for 2005, Published April 24, 2008
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Tremendous Discrepancies in Statistical Studies
and Research

• Various studies have been conducted on the
  prevalence of SCA in youth, however they have
  been based on different criteria and therefore
  produced different results. For example, it is
  reported that
• SCA is a leading cause of sudden death in young
  people, with about 5,700 cases reported in
  children each year according to the American
  Heart Association. DOI 10.1161/CIRCULATIONAHA.109
  .192667 Circulation published online Dec 17,
  2009.
• SCA is estimated to affect up to 7,000 young
  people annually according
• to the Pediatric Clinics of North America,
  Journal 1999 46(2)221-234.
• An estimated 14,000 children and infants die
  annually from SCD according to the Heart Rhythm
  Society, May 2004.

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What is Sudden Cardiac Arrest?
SCA is the condition in which the heart
unexpectedly ceases to function. Often this is
because of irregular and rapid quivering of the
hearts 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. Sudden
Cardiac Arrest is not the same as a heart
attack.
If not treated within minutes, SCA results in
death. The normal rhythm of the heart can only
be restored with defibrillation through an
electrical shock that is safely delivered to the
chest by an automated external defibrillator
(AED).
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Youth with Undetected Heart Conditions Typically
Appear Very Healthy
Most heart conditions that cause SCA in youth
are not detectable with a stethoscope.
Many youth never exhibit any signs or symptoms
until SCA occurs.
John Wesley Foster 9/20/97 - 1/25/06
Marc Allen Richard 5/19/78 - 8/12/07
Olivia Hoff 6/27/89 - 4/22/04
Johannes Claerbout 6/14/74 - 8/20/99
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Without Warning
Eric Paredes, age 15, was seemingly healthy and
athletic with plans to be a police officer.  As
Eric packed for a family vacation, he suffered
SCA and died. 
DeCarlo Polk, age 17, suffered SCD while playing
basketball.
Sarah Friend, age 12, collapsed and died of SCA
while walking up the stairs of a water coaster
at a local water park.
Madison McCarthy, age 5, asked to be excused from
lunch to use the restroom at school where she
then suffered SCA and died.
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Realizing the Urgency
The true incidence and urgency of Sudden Cardiac
Death in youth must be realized to stimulate new
research and strategies that will lead to saving
young lives.
Maggie OMalley, age 17, said she wasnt feeling
well, went to bed and did not wake up.
Matthew Krug, age 16, suffered SCA two days after
his 16th birthday while playing basketball.
Joseph Hendrix, age 23, suffered SCD in his
office 18 days after his physical exam which
found no indication of heart disease.
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Most Common Etiologies of Sudden Cardiac Death
in Seemingly Healthy Youth
Structural Hypertrophic Cardiomyopathy
(HCM) Arrhythmogenic Right Ventricular Dysplasia
(ARVD) Congenital Coronary Artery Abnormalities
(CAA) Dilated Cardiomyopathy (DCM) Marfan
Syndrome Mitral Valve Prolapse (MVP) Electrical L
ong Q-T Syndrome (LQTS) Wolff-Parkinson-White
Syndrome (WPW) Brugada Syndrome Catecholaminergic
Polymorphic Ventricular Tachycardia
(CPVT) Other Commotio Cordis Drugs or Stimulants
Cameron Echols, age 13, died of SCA while shaking
hands with the opposing team after playing a
basketball game.
Timothy Carroll, age 22, died of SCA after
running up three flights of stairs.
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On Autopsy
Structural heart conditions that lead to SCD are
usually found on autopsy. Hypertrophic
Cardiomyopathy, a common structural cause of SCD
in youth, usually reveals an enlarged heart and
one that weighs more than average.
Normal Heart
Hypertrophic Cardiomyopathy
Disorganized cell pattern
Organized cell pattern
Photos from www.clevelandclinic.org
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Primary electrical conditions of the heart, such
as Long Q-T Syndrome, are not detectable on
autopsy the heart is neither enlarged nor does
it weigh more than the average heart. A prior
electrocardiogram (ECG or EKG) revealing the
electrical activity of the heart is critical to
making a correct diagnosis.
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All Youth Are At Risk While At Play
Commotio Cordis is a condition that causes SCA if
a blow to the chest occurs at a critical point
when the heart is electrically recharging.  It
can occur with impact of very little force.  It
is usually caused by a baseball, lacrosse ball,
or 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 occur as a result of impact. 
Wearing a chest protector, thus, creates a false
sense of security. 
Louis Acompora, age 14, blocked a routine shot
with his chest protector on as goalie during a
lacrosse game, triggering SCA and death.
Nader Parman, age 7, was hit in the chest with a
basketball between heartbeats, triggering SCA and
death.
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Medications Can Increase SCA Risk In Youth
Many over-the-counter and prescription
medications can cause a prolonged QT interval and
potentially, SCA. Amongst these are common
antibiotics (such as Erythromycin),
decongestants, antihistamines, and medications
for asthma, ADD ADHD.
Many of these medications are contraindicated
when a cardiac condition exists. For more
information, visit www.azcert.org.
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Common Misdiagnosis

• Fainting and collapse due to cardiac
  dysrhythmias in youth are frequently misdiagnosed
  as seizure disorder lack of sufficient oxygen to
  the brain during a cardiac dysrhythmia can cause
  seizure-like activity and gasping, gurgling,
  moaning, snorting or labored breathing noises.
  
• Shortness of breath due to cardiac conditions in
  youth are frequently misdiagnosed as asthma or
  exercise-induced asthma.

Janna Becker, age 15, died of SCA in her sleep.
She had 2 fainting episodes which doctors thought
may be a seizure disorder, however, not frequent
enough to require medication. She was instructed
to eat more at breakfast and use more salt on her
food.
Emilie Puricelli, age 22, died of SCA in her
sleep. She had a history of fainting. During
exercise or after ingesting any amount of
caffeine, she would tell her mom that her heart
felt like its going crazy. Emilies symptoms
were classic but misdiagnosed by her physicians.
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Early Detection Saves Young Lives
A thorough family history referencing the
Pediatric Sudden Cardiac Death Risk Assessment
Form and a physical examination that includes an
ECG (a 50-100 test) as a baseline test can help
detect approximately 60 of the heart conditions
that can lead to SCA.

• Approximately 2 of youth that are
  heart-screened with an ECG are diagnosed with a
  heart abnormality or concern
• 1 are diagnosed with a life-threatening heart
  condition such as Hypertrophic Cardiomyopathy
  (HCM), Long Q-T Syndrome (LQTS),
  Wolff-Parkinson-White Syndrome (WPW) or
  Arrhythmogenic Right Ventricular Dysplasia (ARVD)

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Warning Signs Symptoms

• Fainting (syncope) or seizure during or after
  physical activity
• Dizziness / lightheadedness during or after
  physical activity
• Fainting or seizure resulting from emotional
  excitement, emotional distress or startle
• Unexplained fainting or seizures
• Chest pain or discomfort / racing heartbeat
• Unusual shortness of breath
• Unusual fatigue / tiredness
• Family history of heart disease
• Family history of unexpected sudden death
• during physical activity or during a seizure, or
• any other unexplained sudden death of an
• otherwise healthy family member under age 50

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Protecting Siblings Family Members

• Many causes of SCA in youth are genetic
  siblings and other family members may also be at
  risk.
• If the cause of SCD is determined, surviving
  family members can investigate genetic testing as
  an option which may save lives.

Brother Sister
Jimmy Brackett, SCD at age 22. He began having
seizures at age 11 and was misdiagnosed with
epilepsy.
Chrissy Brackett, SCD at age 22 - two years after
Jimmy. It was later determined that they both
had Long Q-T Syndrome.
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The Nightmare Continues
For many parents, the tragic pain of losing a
child to SCD is compounded by unanswered
questions as to the underlying cause of death.
Andrew Helgeson, age 18, suffered SCD at home.
Without a baseline recording of their childs ECG
and / or sufficient and properly stored tissue
samples for testing, parents suffer endlessly
with Why?
Sean Anderson, age 10, suffered SCD while
rollerblading in his neighborhood.
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Successful Early Detection
Owen Vollmar suffered several episodes of syncope
(fainting) that his doctors believed to be
related to epilepsy. A screening EKG prior to
starting a medication for ADHD resulted in a
diagnosis of Short Q-T Syndrome. Starting ADHD
medication without the EKG could have proven
fatal. It was then determined that Owen was
having moments of irregular heartbeats causing
him to faint.
Michael Palmer, at age 16, was diagnosed with a
congenital heart defect. It was discovered
during a pre-participation physical for
basketball, and required open heart surgery to
repair. Michael now lives a normal life with an
implanted pacemaker.
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Heart Conditions in Youth are Frequently
Treatable
If a child is diagnosed with a heart condition,
there are many precautionary measures that can be
taken to prevent the likely outcome of SCA
including ? lifestyle modifications ?
medication ? surgical treatments ?
implanting a pacemaker ? implantable
cardioverter defibrillator (ICD)
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Early Defibrillation Saves Lives

• Most occurrences of SCA in youth happen in public
  places. Schools and youth-serving organizations
  must know the Cardiac Chain-of-Survival
• Early Recognition of SCA
• Early Access to 9-1-1
• Early CPR
• Early Defibrillation
• Early Advanced Care

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Prepare Practice

• All schools and youth-serving organizations must
  have a written Emergency Action Plan (EAP)
  defining
• Emergency communication
• Personnel
• Equipment
• Transportation
• EAPs must be reviewed and practiced at least
  annually.

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Successful Early Defibrillation
Kaitlin Forbes, age 15, suffered SCA while
playing softball during gym class at school. She
was revived by CPR and an AED.
Zach Harper, age 16, suffered SCA during class.
An AED and the actions of the school nurse saved
his life.
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Deaths due to SCA can often be prevented
if people are properly educated prepared
Mike Daggy Survivor
Michaela Gagne Survivor
Matt Keene Survivor
Jordan Sansone Survivor
Teddy Okerstrom, Survivor
Matt Nader Survivor
Olivia Quigley Survivor
Claire Dunlap Survivor
Kayla Burt Survivor
Austin Redd Survivor
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Parent Heart Watch Vision
Our vision is to eliminate preventable
disabilities and death of youth caused by Sudden
Cardiac Arrest.
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Parent Heart Watch Objectives

• Early Detection (Primary Intervention)
• In order to achieve our goal, it is imperative
  to first procure
• a) Accurate Data
• b) Accurate Research
• c) Improved Guidelines
• d) Effective Protocols

• Early Defibrillation (Secondary Intervention)
• When early detection is not possible, it is
  critical that
• a) Those who live and work with youth know the
  cardiac chain-of- survival
• b) Schools and youth-serving organizations are
  properly equipped with quickly and publicly
  accessible AEDs

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Parent Heart Watch is Preventing Deaths of Youth
from Sudden Cardiac Arrest by

• Providing a national voice to support and
  endorse legislation, advocacy efforts, and
  changes that improve the chances of survival for
  youth from SCA
• Advocating cardiac screenings for youth in order
  to detect risk factors and conditions associated
  with SCA
• Promoting and supporting in all places where
  youth congregate
• sufficient CPR AED trained staff
• readily and publicly accessible AEDs
• an Emergency Action Plan

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Critical Need for a National Registry
To establish the urgency for additional research,
guidelines, protocols and resources there must
be validation of the incidence of Sudden Cardiac
Arrest Sudden Cardiac Death in Youth.
We Need Your Help!
Jenny Snyder SCD at age 17 while playing soccer.
Clinton Walker SCD at age 17 while sleeping.
Kaitlin Seidel SCD at age 16 in a restaurant.
Nicky Varrenti SCD at age 16 while sleeping.
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How You Can Help

• Closely review and assess all cases of sudden
  death where the cause of death is unknown (no
  resolution), pending, or no past medical history
  of a cardiac condition is documented.
• Investigate family histories referencing the
  Pediatric Sudden Cardiac Death Risk Assessment
  Form (at www.parentheartwatch.org / Facts About
  SCA in Youth) and suggest cardiac screening of
  family members where indicated.
• Investigate unexplained drownings, car
  accidents, and SIDS cases that may actually be
  due to Sudden Cardiac Arrest.

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With your help, we can save so many young lives.
www.ParentHeartWatch.org
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Additional Resources
Heart Rhythm Society www.hrsonline.org
Hypertrophic Cardiomyopathy Association www.4hcm
.org Sudden Arrhythmia Death Syndromes
Foundation www.sads.org National Marfan
Foundation www.marfan.org
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Thank you.