It's incredibly rare for a child or teen to die suddenly because of a heart problem, but it's a horrible tragedy when it does, especially because often it could have been prevented — if someone had just asked the right question.
We tend to think about sudden deaths like these in athletes, since we commonly hear about them happening on a playing field — and because most of the prevention efforts have been aimed at athletes. But they absolutely can happen in children and teens who aren't athletes, according to a 2021 policy statement from the American Academy of Pediatrics. The guidance it offers helps primary care pediatricians better screen their patients for the heart problems that can lead to sudden death. Here's what parents need to understand and do.
What might cause sudden cardiac arrest or death in children or teens?
There are several heart conditions that can lead to a risk of sudden death. They include
- Cardiomyopathies. These are problems with the muscle of the heart. There are a few different kinds, but the kind most likely to lead to sudden death is hypertrophic cardiomyopathy, in which the heart muscle becomes abnormally thick.
- A problem with a coronary artery. The coronary arteries bring oxygenated blood to the heart muscle. If there is a problem with one or both arteries, the heart muscle may not get that needed blood supply. Called an anomalous coronary artery, this is the second leading cause of sudden death after hypertrophic cardiomyopathy.
- Problems with the electrical conduction system of the heart. This is the system that causes the heart to contract and move blood through the body. Problems with this conduction system can lead to an arrhythmia — and the heart may not be able to move blood well or at all.
- Congenital heart disease. When children are born with a heart defect, it puts them at higher risk of arrhythmia, either because of the defect itself or the surgery that was done to treat it.
- Aortopathies. This is the medical term for having something wrong with the aorta that might lead it to balloon (aneurysm) and split open. (The aorta is the main blood vessel leading from the heart to the rest of the body.) Marfan's syndrome is one condition that can cause this, but there are others as well.
Four important screening questions can help identify cardiac risk
Many of these conditions can and do go unrecognized for years. However, the AAP says that these four questions can help identify which children may be at risk:
- Have you ever fainted, passed out, or had an unexplained seizure suddenly and without warning, especially during exercise or in response to sudden loud noises such as doorbells, alarm clocks, or ringing telephones?
- Have you ever had exercise-related chest pain or shortness of breath? Most of the time, this is just from a pulled muscle or asthma. But it may be related to the heart, especially if the pain feels like pressure; radiates to the neck or arm; is associated with sweating, nausea, or fainting; or happens with exercise, straining, or stress.
- Has anyone in your immediate family (parents, grandparents, siblings) or other more distant relatives (aunts, uncles, cousins) died of heart problems or had an unexpected sudden death before age 50? (This includes unexpected drownings, unexplained car accidents in which the relative was driving, and sudden infant death syndrome, or SIDS.)
- Are you related to anyone with hypertrophic cardiomyopathy, hypertrophic obstructive cardiomyopathy, Marfan syndrome, arrhythmogenic cardiomyopathy, long QT syndrome, short QT syndrome, Brugada syndrome, catecholaminergic polymorphic ventricular tachycardia (CPVT), or anyone younger than 50 years with a pacemaker or implantable defibrillator?
The last question underlines the importance of knowing details of your family history. We don't always like to pry, but knowing the details can be crucial for the health of others in the family. So don't be afraid to ask family members about the exact diagnosis they have been given by a doctor — and then share that diagnosis with your doctor. This is true of all health problems, not just heart problems. Of course, some people may not have access to their family health information.
How often should this screening be done?
Ideally, according to the AAP, your child's doctor should ask these questions at routine checkups at least once every three years, or on entry to middle or junior high school and on entry to high school. If the answer is yes to any of the questions, the child should be referred to a cardiologist (or to a cardiologist that specializes in arrhythmias) for further evaluation. Until they are cleared, they shouldn't participate in sports.
Families don't need to wait for a pediatrician to ask the questions, though. If the answer to any of them is yes, or might be yes, talk to your child's doctor right away. You could literally save your child's life.
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