Children and adolescents seldom have “heart attacks,” but they sometimes have heart arrhythmias which can look like the same thing, and be just as deadly. Often they are treated with implantable devices, but need more support than they often get. An expert doctor and the father of a young patient discuss.
- Colin Alesse, parent of heart arrhythmia attack and co-founder Chicagoland Cardiac Connections
- Dr. Greg Webster, cardiologist and electrophysiologist, Lurie Children’s Hospital, Chicago and co-founder, Chicagoland Cardiac Connections
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16-31 Child Heart Arrythmias
Nancy Benson: Back in 2009, Colin Alesse of the Northwest suburbs of Chicago suffered every parent’s worst nightmare when he got a phone call about his 13-year old son, Ryan.
Colin Alesse: Ryan was at a Boy Scout event at our church. He was having fun running around in a parking lot kind of competing with the other scouts where he collapsed. It looked initially like he was dehydrated. It was a warm, beginning of summer day and just wasn’t feeling good, nauseous, really needed to just kind of sit down. And he was progressively getting worse to the point where it was like, “We need to call 911.” We had the EMTs come in and make sure that he was alright, and that’s where things started to continually go downhill.
Benson: Paramedics loaded Ryan into an ambulance and headed to the hospital.
Alesse: But during the ride over, he arrested and was basically flat lining so they had to get out the defibrillators and shock him back into a normal rhythm. When he was in the ER, he arrested again and they lost his pulse for about 20 minutes. So that was, it was just unbelievable. It was kind of like watching an episode on TV but I was actually in there, I was at his feet. And you know, the nurses said, “Colin you’ve got a job, you got to keep talking to him, let him know that he’s not gonna go. Anywhere it’s not his time and that we’re gonna get him back.”
Benson: Doctors revived Ryan… But other adolescents haven’t been so lucky. Every now and then, you’ll hear about a young athlete collapsing and dying on the playing field due to an undiagnosed heart condition. Onlookers may mistakenly call it “a heart attack” because it looks so much like the more common kind.
Greg Webster: We often think of it as being someone who has a sudden lack of blood flow to the heart. So an older gentleman or an older woman who has had a lifetime of their heart building up plaques or difficulties with their coronary arteries who all of a sudden aren’t getting enough blood flow to their heart and that blood flow causes them to have a sudden attack. And that’s certainly what most people mean when they say “a heart attack.”
Benson: That’s Dr. Greg Webster, a cardiologist and electrophysiologist at Lurie children’s hospital in Chicago.
Webster: In children it’s very rare that that is the reason that heart attacks happen. And in fact, it’s probably more accurate in children to talk about sudden arrhythmias as the primary reason that sudden events happen in the heart.
Benson: While most of us picture someone falling to the ground with no pulse when cardiac events occurs… Webster says that’s actually not so common with arrhythmias.
Webster: There’s a wide variety of what happens when people have a sudden heart arrhythmia. Sometimes they feel it, but don’t lose consciousness. Sometimes they feel a sense that something is just profoundly not right, that they’re very scared or they’re very worried and they can feel their heart beating very irregularly or very fast. Some people have a more serious manifestation where they pass out or they lose consciousness suddenly and some people can even hurt themselves as they fall as they lose consciousness. And of course, the less common but the thing that scares all of us is the very most concerning part of that factor in which is people who have a sudden arrhythmia and then unfortunately don’t recover and die there in the field. Although that’s probably not the most common thing to have happen, it’s certainly a terrifying event and it’s why we pay so much attention to keeping it from ever happening.
Benson: When an arrhythmia occurs, doctors work hard to find the cause to prevent a repeat of it. Many cases of arrhythmia happen in youths with no history of heart trouble, and no reason to suspect it. But Webster says a whole variety of diseases can be to blame.
Webster: In young, healthy people whose hearts don’t seem to be giving them any difficulty up until the time that they have an arrhythmia, the most common reasons are inherited diseases of the heart. And in particular, those names are hypertrophic cardiomyopathy, long QT syndrome and other diseases that are passed on from generation to generation or due to new abnormalities in someone’s genes. But there are also a small group of people who have had heart disease from the time that they’re born. Where their heart was not formed normally when they were fetuses and from the time they were born, we knew that there was a problem that was going to have to be solved. Some of these children, the children who have the most extreme versions of this can undergo multiple surgeries or very complex surgeries in order to fix those problems. And a small number of those kids will go on to have either rhythm problems or have some risk of having a sudden death event.
Benson: Webster says many causes of arrhythmia can be treated with surgery, medicines, implantable cardiac defibrillators–or ICD’s–or with pacemakers. But in Ryan Alesse’s case, his father says a week of testing could find no cause.
Alesse: Through all the different tests that were run, everything came back negative as to why this would occur. But they knew that he had a recorded event. His heart was beating or pulsing up to 300 times a minute so it was documented on an EKG so they really said “at this point, we know that an event had occurred and that the best course of action was to have an ICD implanted and begin a course of medicine to make sure that if an arrhythmia occurred again, it could shock him back into a normal heartbeat and then the medicine would help keep his heart rate low so that it wouldn’t again go into an arrhythmia.”
Benson: Now Ryan has a four-inch scar on his shoulder where his defibrillator was implanted, and he’s been banned from playing strenuous or impact sports in order to keep his heart rate down. The defibrillator has gone off twice in the time he’s had it.
Alesse: That’s a fear in itself – my son says it feels like getting kicked in the chest when that shock occurs. So that will drop him to the knees and he’s down for a little bit.
Benson: Colin Alesse worries that his other children may also have a so-far unidentified genetic flaw putting them at risk. A few years ago, the family even had genetic testing done… But that also came up empty.
Alesse: It’s kind of frustrating in that sense that you just don’t know – don’t know how to potentially screen other people in the family because he doesn’t have an indicator genetically speaking. So, my other kids, we worry about them. We try not to let it overcome our lives. But it’s kind of in the back of your mind.
Benson: So how does a family deal with it? Alesse says his family had plenty of clinical support from doctors and nurses… But community support was sparse. That’s why in a handful of cities, doctors and parents of kids with implanted devices have created support groups. Webster and Alesse are among the founders of Chicagoland Cardiac Connections and established what they call heart-to-heart day in mid September.
Webster: Pacemakers and ICD’s in the United States are extremely common. If you’re a person over the age of 70 and you get a pacemaker and ICD, you may not be the only person in your house with a pacemaker… You may not be the only person in your friend group with a pacemaker. However, if you’re 13 when you get a pacemaker and ICD, you may be the only person in your school or the only person in your community of your age that has a pacemaker. And we know that some people who have these devices will have quality of life issues surrounding the devices. Some people with ICD’s will have a higher rate of anxiety disorders. Some people with pacemakers and ICD’s will identify that they feel different or separate from their peers and by creating a community where people can get together and recognize that there are other similar people with exactly the same concerns that they have, it allows everybody to be stronger and allows everybody to recognize that they’re moving forward in their lives in the best way that they can.
Benson: Alesse says that only one percent of pacemakers and ICD’s are implanted in children and adolescents.
You can find out more about support groups such as Chicagoland Cardiac Connections at cccheart.org, or through a link on our website, radiohealthjournal.net.
Our production director is Sean Waldron.
I’m Nancy Benson.