| The Pulse...Let the Beat Go On! |
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| Volume 3 Issue 2 |
April-June 2009 |
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Greetings!
After reviewing the second quarter of 2009, I want to express my gratitude for your support of Parent Heart Watch, and on behalf of all our members, for your support of each other. It's a team effort. We give each other strength.
Many times I hear "through the grapevine" about your projects, programs or efforts. Not everyone has the same abilities - we all cope as best we are able. Most of our efforts never make the media or get wide-spread public attention, but every effort makes a "ripple." All our efforts make a difference. Whether you're speaking to friends or coworkers, supporting other Parent Heart Watch members, holding events or speaking at conferences, together we are creating a wave of change across this country.
I feel confident that as long as we continue to stay united, we continue to stay strong. Our passion and strength will generate results. We are many champions with one mission... for thousands of reasons. Thank you for being a part of Parent Heart Watch.
Sincerely,
Linette Derminer
Executive Director |
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| New PHW Telephone Numbers
 Effective immediately the new Parent Heart Watch telephone number is 800-717-5828 and fax number is 888-669-4924. |
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Baseball, Hot Dogs, AEDs & Parent Heart Watch!
National CPR & AED Awareness Week was celebrated on June 7th at City Island, Harrisburg, PA, with PHW members Cris and Skip Over, Irene and Tom Edmunds, Jean and Tim Yeakle, Martha Lopez-Anderson, and Rhonda and Jim Foster, along with South Central EMS staff members Mike Crossley, Paramedic and Tommy Bennett, EMT; minor league baseball team, The Harrisburg Senators, and their 4,995 fans. Parent Heart Watch was invited to be The Harrisburg Senators' "Community Organization of the Game."
PHW member Martha Lopez-Anderson was interviewed before the game on the field (and displayed on the new digital video scoreboard) and again at half-time over the radio station 1460 AM "The Ticket." PHW member Rhonda Foster had the honor of throwing the first pitch.
In recognition of National CPR & AED Awareness Week, a special PHW prize-drawing was held for a free AED (donated to PHW by Zoll Medical Corp) and presented by PHW to the lucky ticket-winner's school of choice. To create awareness, all the baseball game attendees were eligible for the drawing.
 Congratulations to Olivia and her dad, Mark Deja, who won the AED for the Good Shepherd School in Camp Hill, PA!
Pictured from left to right: Rhonda Foster, Olivia Deja, Martha Lopez-Anderson |
Ask Laura... 
"Ask Laura" is a new feature of our newsletter. Laura Friend, Associate Director and Membership Coordinator, will respond to frequently asked questions. If you have a question for Laura that may also be of interest to other members, please send it to Laura@parentheartwatch.org. Laura will collect these questions, select the most commonly asked question and then respond to it in the next newsletter.
Dear Laura,
We will be having a powder puff football game fundraiser at our local high school in memory of our daughter. Can our promotional materials read: "Proceeds to Benefit Parent Heart Watch?" Do we need approval to use the Parent Heart Watch logo?
Dear PHW member,
Thank you for your efforts in memory of your daughter Kaitlin and PHW. As members of PHW you agreed to abide by the PHW Membership Agreement bylaws and Conflict of Interest policy. As long as you adhere to the Membership Agreement, you are authorized to use the PHW logo. Thus, the promotional materials may read "Proceeds to Benefit Parent Heart Watch" and you may use the PHW logo. Thank you again for your support of PHW! |
A PHW Fundraiser
The Kaitlin Seidel Memorial Powder Puff game was held on Friday, May 22 at JJ Pearce High School in Richardson, Texas. Kaitlin, 16, lost her life to SCA on July 30, 2006. Kaitlin's parents, Rob and Correll Seidel, and three of her friends, were hosts to a very successful fundraiser in memory of Kaitlin. What is powder puff football??? It is a flag football game with the junior girls playing the senior girls in a serious game of football. Football players served as coaches and for more entertainment, 20 boys dressed as cheerleaders amused the audience by performing to Britney Spears music at halftime. Great fun was had by all. Final score.....Seniors 14 / Juniors 0. According to Kaitlin's father, Rob Seidel, it is a rite of passage for the seniors to win! The stadium was decorated in Kaitlin's colors, turquoise and purple. The Seidels hosted an after-the-game swim party at their house for the seniors! Kaitlin's Powder Puff game benefited Parent Heart Watch and raised $4,300!!! Parent Heart Watch is thrilled to have been a part of Kaitlin's memorial and hopes more lives will be saved by the awareness you provided.
 Kaitlin was vivacious, with a bubbly personality and had a positive impact on so many lives. She always had a smile on her face and was the joy of our hearts. Kaitlin was an active student at JJ Pearce High School. She was a cheerleader, volleyball and varsity softball player. She lettered her freshmen and sophomore years in softball. She was an active participant in Young Life activities.
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| Ask The Doctor...
"Ask The Doctor" questions & answers are addressed by our PHW Medical Advisory Board. This question was answered by Robert Campbell, MD., of Children's Healthcare of Atlanta Sibley Heart Center.
Question: "Would an AED cause a certain type of rhythm to stop the heart, and if so what type, and do we know what percent of SCA patients would fall into this category?"
 Answer: In general, there are three types of pulseless "collapse" heart rhythms, which are life-threatening without vigorous, prompt, and effective resuscitation. One is call asystole, which means no electrical activity on ECG, and no mechanical pump activity of the heart. An AED shock is not indicated for asystole. This patient's survival depends upon cardiopulmonary resuscitation and drug management. A second type is electro-mechanical dissociation (EMD), also known as pulseless electrical activity [PEA]. For this rhythm, the ECG will show a generally slow electrical activity, but there is no manifestation of effective pump activity (no blood pressure, no pulse, no heartbeat, and no evidence for cardiac motion on echocardiography (ultrasound)). This rhythm, too, is not appropriate for AED electrical conversion. CPR and drug treatment are cornerstones for survival of patients with EMD. The third, and final pulseless "collapse" rhythm, is ventricular fibrillation (VF). The ECG demonstrates very rapid, disorganized electrical activity. Echocardiography would show no organized pump function of the heart muscle, but more of a "quivering" motion, which does not generate adequate blood pressure or blood flow. AEDs are appropriate for this rhythm. The therapeutic effect of the AED is to synchronously terminate electrical activity in all areas of the heart (upper and lower chambers), with hopefully then resumption spontaneously of normal heartbeat and rhythm, which generates effective mechanical pump activity of the heart. AEDs terminate only these rapid fast heart rates, not slower rates (EMD) or asystole. When an AED is used to treat ventricular fibrillation, the patient may resume a spontaneous organized effective rhythm, or may revert to EMD or asystole. The AED should recognize EMD or asystole, and further AED shocks would not be indicated.
There is limited data about the initial rhythm disturbance immediately upon sudden cardiac arrest in children. Some patients show evidence of VF, but many show either EMD, asystole, or severe bradycardia (slow heart rate) associated with no blood pressure and collapse, causing the sudden cardiac arrest. Many pediatric cardiac arrests are caused by respiratory or metabolic problems, not primary cardiac disease. Obviously management of the primary cause (respiratory and ventilatory support of the lungs or correction of metabolic abnormalities) in many cases can be life saving, while CPR is administered.
It is highly unlikely that an AED would cause a rhythm disturbance. Even with the best emergency response, most effective CPR, and most appropriate of AEDs, not all patients will survive.
If a person appears to be compromised and heading towards SCA, it seems indicated to have the device immediately available and perhaps even applied prophylactically; better safe than sorry. This may conflict with published guidelines or conventional wisdom, that I am not aware of. We preach prepare for the worst, hope for the best.
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| PHW Leadership Participates at Key National Conferences
American Medical Society for Sports Medicine (AMSSM) 18th Annual Meeting Tampa, FL - April 25, 2009
 Linette Derminer greets attendees at AMSSM
PHW was represented by Martha Lopez- Anderson, Andy Anderson and Linette Derminer during the one--day special session on the "Prevention of Sudden Cardiac Death in Athletes" which was attended by approximately 900 sports medicine professionals. Three members of the PHW Medical Advisory Board made pro-screening presentations during the session on "Screening: Can We Do Better in the U.S.?" Dr. Campbell focused on Using Personal and Family History in the Pre- Participation Examination, Dr. Drezner presented "ECG Screening in the U.S.: Pro" and Dr. Marek followed with "ECG Screening: A U.S. Experience." The con side of ECG screening was presented by Dr. Benjamin D. Levine.
The PHW information table had a constant flow of visitors during the conference. Many people stopped to view the PHW Stories of the Heart posters.
AMSSM attendees read PHW Stories of the Heart and gather.
Pediatric Academic Society (PAS) Conference - Baltimore, MD
May 2009
 PHW was represented by Linette Derminer, Richard and Rita Helgeson, and Stew Krug. Approximately 6,500 pediatric specialists and researchers attended the conference. The primary focus of the conference was neonatal care. Several pediatric cardiologists stopped by our booth, were supportive and wanted to know what they could do to help our mission.
Linette Derminer and Stew Krug at the PWH Booth at PAS Conference |
 Heart Rhythm Society (HRS) Conference Boston, MA - May 13-16, 2009
Pictured: Michaela Gagne and Olivia Quigley
PHW was represented by Linette Derminer and Laura Friend at the Heart Rhythm Society (HRS) 2009 Boston MA Conference. Approximately 13,000 Heart Electrical Specialists attended the event. Exhibit hours were two full days from 9-5 and one half day from 9-12. Traffic at the PWH Booth was very busy. Many people stopped to ask questions about PHW and what we do. The most frequently asked question was how to connect young ICD patients and their parents with other families for support.
PHW Massachusetts members Michaela Gagne and her father, Ron Gagne, volunteered at the exhibit booth. We coordinated a meeting for two of our Boston survivors, Michaela Gagne and our newest PHW member, 7 year old Olivia Quigley. Olivia and her parents, Joe and Catherine Quigley, stopped by for a quick visit on Thursday. You can read Olivia's story on the website under, "Stories of Survival" Olivia is doing very well today. She has undergone two ICD surgeries in the past 6 weeks. |
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Experienced Member Spotlight - The Barcia's
Nancy and AJ Barcia are parent members from Matairie, Louisiana. They have been PHW members since 2006.
On March 29, 2005, Chad Barcia, age 17, was playing rugby for his school. He  was standing on the field laughing with his friends about a play that he had just ran when he collapsed on the field and died from undiagnosed Hypertrophic Cardiomyopathy.
Since Chad's death, the Barcia's have been strong advocates for SCA awareness and prevention. They immediately founded the Chad Barcia Athlete Awareness Foundation. The Foundation's mission is three-fold: to identify, secure and provide more in-depth health screening for students participating in athletic activities at school; to ensure a defibrillator is available for all school functions; and to provide enhanced safety protection gear for all students playing sports at the school.
The Chad Foundation donated its first AED to De La Salle High School, New Orleans, Chad's Alma Mater, in August 2005. Among the many achievements of the Foundation are: direct donation of more than 20 AEDs, advocacy that led to the placement of an additional 87 AEDs, and in August, 2006, in conjunction with Oschner's Children's Cardiology Department, helped facilitate the first echocardiography testing of De La Salle's football team. As a result of the echo testing, four players were found to have minor heart anomalies. The Barcias have lobbied both local and state officials.
To learn more about the Chad Barcia Athlete Awareness Foundation, use the following link: www.chadbarciafoundation.org
Pictured above; AJ Barcia and Nancy Barcia making an AED donation to Liz Craft of St. Frederick's High School in Monroe, LA, in May of this year. |
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Membership Update
During the months of April-July 2009, the following families and individuals became members of PHW:
The Carson Family - Pennsylvania Alan Novak - Tennessee
The Deary Family - California The Okerstrom Family - Minnesota
The Driscoll Family - Washington Corinne Ruiz - California
The Dunlap Family - Florida The Saccone II Family - Kentucky
Janice English - Texas The Seidel Family - Texas
The Huggins Family - Florida Karen Schrah - Texas
The Krzenski Family - Minnesota The Wetters Family - Illinois |
Recent News Articles
Click on title to review the entire article.
Often Undiagnosed, Fibromuscular Dysplasia (FMD) May Afflict Up to 5% of Americans.
Some Parents Believe New Study Reinforces Link Between Stimulants and Sudden Cardiac Death.
Cardiac problems are the number one killer of adults in the United States. However, many of these conditions begin in childhood but go undetected until collapse. One school district in Texas is addressing the problem and the results are surprising.
The death of a young athlete is always a tragedy, recently brought into focus in New Jersey by the loss of a high school track star.
Survival rates from out-of-hospital sudden cardiac arrest almost doubled when professional rescuers using cardiopulmonary resuscitation (CPR) gave better chest compressions and minimized interruptions to them, according to research reported in Circulation: Journal of the American Heart Association. |
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Upcoming National & Regional Events
Parent Heart Watch representatives will be participating in the following events. PHW members, who live in these areas and would like to participate, should contact Linette Derminer at Linette@ParentHeartWatch.org.
August 12 - Jennifer Lynn Snyder Teen Heart Foundation - Picnic in the Park - 1st annual fundraiser
October 1-31 - Every Voice Makes a Difference!
Cool weather, beautiful fall colors (at least, for some of us), pumpkins and...National Sudden Cardiac Arrest Awareness Month! It's not too soon to start thinking about how you'll make a difference come October. And, guess what else October happens to be? It's Parent Heart Watch's birthday! Do you know how old Parent Heart Watch is?
Stay tuned and check your mailbox for more information on how we can all p-a-r-t-y and make some REAL noise!
in Carlisle, PA
October 31 - 2nd Parent Heart Watch Project JumpStart-A-Heart! free CPR training in Harrisburg, PA |
 Your Donations Make a Difference!
In order to continue with aggressive national efforts to educate about SCA in youth, to advocate for AEDs in schools, sporting events and practices and heart screenings for youth, PHW needs your financial support. No dollar amount is too small!! Every dollar helps educate and advocate for change! If you would like to make a donation to help, please send a check to Parent Heart Watch, PO Box 237, Geneva, OH 44041. Also, you can now make a donation using your favorite credit card. Please use this link PHW Website to go to the PHW web site and the "Make a Donation" page.
Thank you for making a difference. |
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