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Families share their stories of children who died from sudden cardiac arrest. One way to prevent sudden cardiac arrest in young people is to have an automated external defibrillator on hand, especially at schools. The Youth Heart Watch program at CHOP was developed to prevent the incidence of sudden cardiac arrest in children.
to significantly reduce sudden cardiac arrest and death among children
Mother of Greg: Greg went to a small catholic school. So here he is tenth grader, six-foot-two, 220 pounds. He played 10 minutes of the first half and really had a good game. And about a minute later, we were called into the locker room.
And when I walked into the locker room, he was on the floor, and he wasn't moving and his eyes were closed. And I went over and I knelt down and I grabbed his head, and I took his face in my hands and I said, "Gregory," I said, "you're not breathing. Why aren't you breathing, Greg?" And I’m going "breathe" and that moment his eyes opened and his mouth opened and he tried to gasp for a breath and nothing happened, and he closed his eyes, closed his mouth and that was it.
Kim Garner, Mother of Nick Garner: Well, it was during football season so I had gotten up early and I had gone into each of the children's rooms and just lightly kissed them on the forehead, not to wake them up, and I went about my business. And it was probably about another hour or so after that that I asked Brielle to go wake her brother up, and she just called for me and she said that there was something wrong with Nick. And I just got up--not expecting to see anything really wrong. I thought maybe she was playing or joking around. And I when I went up to him and saw him, He had already passed, he was gone.
Brielle Garner, Sister of Nick Garner: The thought had briefly run through my mind that it was possibly occurring that he was, you know, gone, but I didn't want to accept that. I couldn't accept it at that time. I was 11 years old. You know, you just don't think that your 9-year-old brother is going to be taken from you.
Brooke Garner, Sister of Nick Garner: I wasn't home that night. I called from a friend’s house that I had stayed over and my aunt answered the phone. And that early in the morning it was odd to me and all she kept saying was, "You got to get home, you got to get home now."
Toni Pelligrini, Mother of Louis Savino: I took Louis to — actually to play soccer. It was a practice session like any other practice session. And I waited in my car like I did every other time. And what had happened — two of his teammates came running over to the car to tell me that Louis collapsed. Three weeks prior, Louis had complained about — when he was practicing once again that he had a tough time breathing. So I made an appointment with his pediatrician, and he was misdiagnosed with having exercise-induced asthma. His teammate was on the cell phone calling for help. And we got taken to the hospital, and at that point they worked on him and then the doctor came to me while I was in the waiting room and basically said that she apologized, but Louis didn't make it.
Mother of Greg: It took me six years to change his room. Because I just wanted to think that he was away. I feel his presence in my house, and sometimes it's very difficult to be home. I can't tell you what it really feels like to lose a child. And I miss Gregory with every ounce of my being. And I feel when he died, you know, a part of me died as well. And I often think that my heart is held together with threads.
Victoria L. Vetter, MD: Sudden cardiac arrest is the, as stated, sudden and unexpected stopping of the heart. The heart, instead of beating in an effective manner and pumping blood and nutrients to the body, begins to quiver and does not provide an effective blood flow. So if that is not corrected, within five to six minutes, the organs in the body will die and the individual dies.
Vinay Nadkarni, MD: It's hard to know when a sudden cardiac arrest will occur. Sometimes there are warning signs — shortness of breath, exercise intolerance, having trouble with sports. But they can also happen out of the blue. It can be a perfectly healthy child who suddenly collapses. Children can have an underlying problem of heart rhythm like a long qt syndrome, which can result in an arrhythmia leading to sudden cardiac arrest. And sometimes children can be exposed to drugs or to conditions like an electric shock, which can lead to an arrest.
Mother of Greg: I've met so many different parents that, I think, the hardest thing is meeting the parents that don't know why their child died. That there wasn't an autopsy done or the corner or the medical examiner did not come up with a cause of death, and I think that's the hardest thing for the parents to accept because they don't know what to do.
Lorraine Sikora, Aunt of Louis Savino: Sudden death in kids is not a topic that anyone wants to discuss. No one ever believes it's going to happen to them and I think it's important — what we do is we explain that Louis was just a normal kid, doing a normal thing, and something tragic did happen. But, as a result, there are things that we can do to prevent these tragedies from occurring again.
One of the first things I read was that family history was so crucial in a case where someone dies under the age of 50 suddenly. So one of the first things I had done two weeks after Louis passed is I took my son, who at the time was 6, to the pediatrician. And much to my surprise the echocardiogram and the EKG came back with a disorder for my son. He is monitored now. It is very frightening that we found this, although I do consider it a blessing because we would have never checked, had we not lost Louis. We believe that family history and the knowledge that when you lose someone very young to sudden death, the whole family should be screened.
Victoria L. Vetter, MD: An AED is an Automated External Defibrillator. It is a computerized system that can deliver an electric shock to the heart to jump-start or to reinitiate a normal heartbeat.
Vinay Nadkarni, MD: AEDs are really coaches. They're smart shock boxes. You would call 9-1-1. You would start chest compressions and listen for instructions from the person directing you on the other side sending someone to get that life-saving AED.
Victoria L. Vetter, MD: Initially, the first instruction it gives you is to start CPR and then it will check the rhythm and then it will shock. Then it will reassess. Then it will tell you if you need to restart CPR and start the cycle again or not.
Janet Ostoyich, RN: The use of the unit is really very easy. Once people practice on them with the trainers that we have, the practice trainers, and they see how simple it is, the level of anxiety goes down. The feeling that "you know what? I can do this. I could help somebody with this unit."
Rob Garner, Father of Nick Garner: You can build anybody's awareness. You know, there's value added in it. I mean, had we been more aware, if we knew some of the, you know, some of the symptoms it would have been great. You know, would the outcome have changed? I don't know, you know, sometimes you learn to believe that regardless of, you know, depending on your faith, it's going to be what it's going to be. But I'd like to believe that the more you can make people aware and you can avoid the tragedies that we had to deal with.
Lori Bahr, Mother of Nicole Bahr: I got a phone call from Nicole telling me that she got to the pool okay, and she said that they were going to eat, and she was going to go into the pool. About a half-hour later, I got a phone call from one of the moms asking me "Has Nicole ever passed out before?" And I said, "no, why?" And then the phone went silent. And it seemed like it was about a half-hour before I actually heard something, but it was much quicker. I heard them in the background saying that, "She has a pulse." And I said, "What? What do you mean she has a pulse?" They said, "You need to come over to the swim club right away."
(Nicole's life was saved by an AED)
Janet Ostoyich, RN: I look at my faculty and I look at the students and I look at my parents and grandparents that come into my school and I have a sense of — I guess, security that I know that if I have someone in my building, I feel I can do something to help them if something were to happen in my building.
Personally, this is my personal feeling, I think they should be in every school building. I don't need any convincing. And it's such a small price to pay for an insurance policy, such a small price to pay.
Victoria L. Vetter, MD: We decided to develop a program at The Children's Hospital of Philadelphia called "Youth Heart Watch." We were interested in finding individuals who might be at risk for sudden cardiac arrest and protecting them if they did have a sudden cardiac arrest. So we were literally watching the hearts of the young.
Vinay Nadkarni, MD: Well, Youth Heart Watch gives us hope. Youth Heart Watch is about taking care of the ones we love. It's about being prepared for the worst thing that could happen — cardiac arrest. It's about giving us confidence that we can do the right thing.
Narrator: Youth Heart Watch is a comprehensive program with many parts, but one simple, very important goal — to significantly reduce sudden cardiac arrest and death among children. We aim to make sure that every school in Pennsylvania, New Jersey, and Delaware has AEDs and staff trained to use them and perform CPR. We'll help you find ways to raise the money to purchase AEDs. We'll help you start CPR and AED training programs. We'll help you run drills and learn how to keep your programs and equipment up to date. At Youth Heart Watch one of our most important goals is to raise awareness of risk factors and symptoms of sudden cardiac arrest. We have started to perform screenings with electrocardiograms in local communities. At every screening we find children with undiagnosed heart conditions, some at risk for sudden cardiac arrest. Join Youth Heart Watch. Together we can take steps now that can mean the difference between life and death for one of your students.
Vinay Nadkarni, MD: With CPR and ready availability of an AED, one can quadruple survival from sudden cardiac arrest in the community.