When you send your child to school you expect them to be safe; are they?
Are your children going to school that has a fire extinguisher, but they still don't have an automated external defibrillator (AED)? Changing this scenario is simply a matter of education and training. When AEDs are as accepted and as common as fire extinguisher, then more lives will be saved.
Our mission is to educate the community about sudden cardiac arrest (SCA) in young people, the importance of AED's in schools and public places, and to tell our story. Our attitude is that if our story can save a life or help stop a family from going through what we've experienced, it's worth telling. This is a story about a tragedy, a miracle and a cause.
SEAN'S STORY: A LIFE CHANGING EVENT
On November 2nd, 2000 our fourteen year-old son Sean, was running the track in PE at school and he suffered a sudden cardiac arrest. (SCA) Or in technical terms, a ventricular fibrillation. It took ten minutes and eighteen seconds for the E.M.T.'s to stabilize his heart and save his life. His coach was marking the lines for the football game that night and saw him collapse and started CPR until the EMS got there. He basically was the emergency link that saved his life. (These are the true heroes of the story) Sean survived, but the lack of oxygen caused massive brain injury and left him in a coma.
Sean was an all-star football player and wrestler and tough as nails, but he got hit hard. We call Sean "our miracle in progress". First off he should not have survived the attack. (Your brain dies in five minutes without oxygen) And secondly, then amount of brain damage should have left him in a vegetative state and he has amazing cognitive capabilities.
From the MRI's, we knew there was a lot of damage, but we didn't know how it would totally affect him. It took seven months for him to totally come out of his coma. It was a stressful waiting game to find out how bad the damage was and how much of his physical and mental facilities he would be left with. The problem that caused the SCA was a condition called "Permanent form of junctional reciprocating tachycardia - PJRT". In layman terms, he had extra electrical circuits in his heart that caused a constant firing in the upper atrium.
His electrophysiologist heart doctor told us that the constant beating in the upper chambers of his heart probably made the heart muscle swell and ultimately lead to the ventricular fibrillation (V.F.). V.F. is basically where the whole heart rhythm fires chaotically and no effective blood pumping action occurs.
EVERY SECOND COUNTS
Without oxygen you have five minutes before the brain dies. And, the only thing that can stop the V.F. is shock from a defibrillator. Statistically, SCA kills over a quarter of million people in America each year. It is rarer in children and teenagers - approximately ten thousand deaths a year. And, according to our research, many of those could be prevented with the right training and equipment present in our schools; like AED's (Automated External Defibrillators)
The prognosis was bleak and the neurologist told us to be prepared for a vegetative state but, we had faith and believe for the best. (And still do) The first thing that Sean did when he came out of his coma, was smile. We knew we had Sean back with us again. But, the brain damage was extensive and he was left with no speech skills, cortical blindness, very slow motor skills and unable to walk. Basically, we now had a 24/7 care situation and some tough decisions to make.
We knew it would be difficult but to us, family takes care of family. So we started the process to bring him home. That process took more than a year and then another year to get our home stabilized and a routine established. We have lived the last eight-plus years with a full-care handicapped family member in our home.
TRYING TO GET BACK TO A NORMAL LIFE
Time flew by and when we finally stuck our head up years had passed by. Sean was stable and healthy and we finally got a routine in our home. It was time to focus on all the other important things, like making money and moving my family forward again. I loved construction and developed a plan to re-engage back into the industry, but we also wanted to integrate the disability aspect into our construction business.
By this time, our oldest son, Luc, was a couple years into the Army and I was looking for a stable landing platform for him when he finished his enlistment. We discussed a joint venture that would work for all of us. We launched our corporation while Luc was on leave from Iraq. A partnership was created and a dream was launched.
SEAN "THE MIRACLE IN PROGRESS"
I come home and tell him stories about my day. He loves my stories and he is always laughing at me. From start to finish our family’s heart is in every project we do. Every time we grow weary, all we have to do is look at or think about Sean. He doesn't have a choice we do, so our attitude is everything.
His life and happiness is totally dependent on my wife, his care-givers and me. Sean doesn't have a choice, he wakes up and lives his condition every day, so we get up every day and give it him our best. He deserves that much for his bravery through all this. It is amazing to watch people when they meet Sean. Although he is the person with the disability he empowers them.
LUC: ANOTHER HERO
Luc was fifteen when Sean had his attack and lived every day through the tragedy, recovery, moving Sean home and even was part of his daily care. There is a whole serious of impacts on a teenager when something tragic happens to their sibling. Luc was involved in all the advocacy work and fund raisers we did.
We knew that when tragedy strikes a family, it can either tear that family apart or bind them tighter together. To watch him sacrifice a huge part of his life and time at such a young age was truly a honor and made us proud. Luc was incredible and our goal was to keep him involved, but also allow him to continue on as a developing teenage. A few years later he joined the Army and has served two tours in Iraq and made us proud again.
TAMMY: WIFE AND MOTHER
There is not enough space to write about Tammy as a person and as a mother. First off, she's a mom and the impact of a child struck to almost the point of death and then left severely disabled was and still is difficult. Ten years of medical appointments, daily care, disappointments, miracles and joy are tough on anyone, but she's has weathered all the storms beautifully.
Sean and Luc are blessed to have her as a mother and to me as a wife. Tireless devotion to her family is her signature and watching her with Sean is a joy. She is the glue that holds relationships together. I always tell people, everybody likes Tammy; with me, they either really like or they don't.
DAD: A MAN WHO WANTED ANSWERS AND CHANGE
I will never forget the call I received from Tammy who called me while I was at my parents in the Tri-Cities. I had a lot to think about on the drive over the mountain. I still vividly remember the walk from the parking lot to the cardiac ward as if it had happened yesterday. It was an unbelievable situation and it was the beginning of a total life changing situation for both Sean and us. I could write a book (and plan to) on the whole event. You are impacted as a family, your world stops and every minute of the day revolves around the event and all the unknowns of the future. It's a long complex journey that I will probably write more about in the future.
MORE ON "THE CAUSE"
AED programs in schools have been a heated debate for the last decade. We understand that placing an AED in a school is just the beginning. There are guidelines to effective AED programs, equipment over-site and maintenance, training and medical supervision, etc; There are also decisions on effective unit locations and how many units should be in a school, None of this is difficult, it just takes a willingness to embrace it.
SCAs that occur in the public without access to AEDs is less than a 7% survival rate. When you wait the typical 8 to 12 minutes for EMS to arrive, the victim is usually dies. The AHA "Chain if survival" calls for defibrillation in 3 to 5 minutes. That time-line requires a public accessible AED. Sudden cardiac arrest claims almost 300,000 victims a year in this country. Survival rates vary from 7% to 75% depending on how accessible defibrillation is for the victim. (And, the Chain of Survival)
Public accessible AEDs (PAD) are increasingly common in much of our public domain. Every teacher, coach, school nurse, parent and EMS personnel we've talked to about placing AEDs in schools have been positive. They get it; that's not where the challenge is. The only way to change this scenario is to have an educated public. The details of what we've experienced in our work to get AEDs in schools is on the, AED in Schools page. This site and our blog is designed to educate, bring the issues to the public eye and show the arguments for and against AED placement in our schools.
For more about the cause this family was involved in, please read: THE CAUSE
See Sean's "Mission of the Heart" on:
- www.seanshipler.org
