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Defibrillators: Young People Talk
About What To Expect

When you think about heart conditions, you don’t usually think about children and young people, including teens. After all, most of us assume that heart problems are for older people—not kids.

Heart conditions in children aren’t common. But if present, many young people’s heart conditions involve an abnormal rhythm (arrhythmia). And when your heart beats too fast or too slow, it can cause problems for the rest of your body.

Video

	What’s It All About: Young People and ICDs Complete Video (14 minutes) Video segments: What Is an ICD? "It’s like having a rescue team with you." Play Video (2.5 minutes) What’s It Like to Have an ICD? "My mind was just racing with all sorts of questions." Play Video (4 minutes) What Will Your Friends Think? "I used to think that everyone would stare at me . . . " Play Video (2.5 minutes) Life With Your ICD "An ICD is designed to help you, not change you." Play Video (4 minutes) Talk to your doctor about important safety information.

For fast arrhythmias, your doctor might suggest a device called an implantable cardioverter defibrillator, or ICD. Sometimes it’s called just a defibrillator. The defibrillator senses arrhythmias and sends small pulses of electricity or shocks to return your heart rhythm to normal.

Watch the video (see box at right) to learn more about ICDs—and what it’s like to be a young person with an ICD.

What Is an ICD?

A defibrillator, or ICD, is a small implanted device that helps keep your heart rhythms normal. During an implant operation, the doctor inserts the device under the skin of your chest, near your shoulder or possibly in your abdomen. Thin insulated wires (leads) placed in your heart connect to the defibrillator.

A computer in the defibrillator monitors your heart rhythms. When it senses an arrhythmia, the defibrillator sends small pulses of electricity or a shock to help return your heart rhythm to normal
(Figure 1).

Figure 1 Implantable Cardioverter Defibrillator (ICD) Click to enlarge

Young people with these conditions might need a defibrillator:

• Long-QT syndrome—a genetic heart rhythm condition
• Ventricular tachycardia—a type of fast arrhythmia that prevents the heart’s lower chambers (ventricles) from filling with and then pumping enough blood to the rest of the body
• Ventricular fibrillation—a very fast, chaotic arrhythmia that causes the heart to quiver rather than beat as it should. When this happens, the heart cannot pump blood to the rest of the body

What’s It Like to Have an ICD?

Young people may have different reactions when learn they have a heart condition. Some feel shocked, angry, or scared—even guilty. Here’s what some young people with defibrillators had to say:

• “At first I was upset: why is this happening to me? I’m young. Why do I need this little machine?”
• “I couldn’t believe it. When doctors told me…I started thinking about all the things I want to do: graduate from high school, go to college, raise a family. All those things you take for granted suddenly seemed so uncertain.”
• “I felt really guilty. Did I do something to cause this? I felt like it was all my fault.”
• “I had so many questions: How would the device work? What would it feel like? How would it look? Would I still be the same person?”

The good news? These kids all learned to manage and enjoy life with their ICDs.  Here’s what they said after getting used to their defibrillators:

• “I hated the idea of having to depend on a machine, but I really liked having the freedom that everyone else my age had.”
• “I like knowing that it’s there for me all the time. My mom calls it my safety net.”
• “The ICD is no big deal. I can still do everything I used to: I go shopping with friends, go out to eat and to concerts, and I just got a job. I’m planning for college. I’m really excited…and I figure that life is what I choose to make it.”

Many people wonder how their lives will change because of their defibrillators. Having a defibrillator doesn’t make you any different. It just helps your heart rhythms stay normal.

Most people who have defibrillators can enjoy the same activities they did before they got their devices. If you have to adjust your lifestyle, it’s probably because of your heart condition, not the ICD. Of course, everyone’s situation is different, so each person gets individual advice. Your doctor or nurse will help you learn what’s best for you.

What Will Your Friends Think?

Many young people who get defibrillators worry about how their family and friends will react. Many people don’t know much about heart conditions or defibrillators. Young people who already have ICDs offer these tips:

• Reassure friends—Some friends might be nervous about being able to help in an emergency. But a defibrillator is like having an emergency rescue crew with you. Your friends won’t have to learn any special skills or do anything more than make a phone call if needed.
• Share information—It’s important to be open and honest with family and friends who want to learn more about how an ICD works—or what the scar looks like (Figure 2). Showing this article to curious friends could help.

Figure 2. A device implant scar is usually located near your shoulder. Some scars are barely noticeable and many fade over time.

Life With Your ICD

Above all, ICDs are designed to help you, not change you. It’s normal for people to have lots of questions about their heart conditions and devices. And it’s normal for everyone to wonder how life will change.

Living with a defibrillator will involve some small changes. For one thing, you will have regular office visits so your doctor can check your device. At these follow-up visits, the doctor or nurse checks the energy level of the battery, reviews heart rhythm and treatment information stored in the device, and adjusts any settings, if needed.

Eventually, the defibrillator will need to be replaced when the battery energy level gets low. Because everyone is different, replacement times are different, too. Your doctor or nurse can tell you more about the timing of your device replacement.

You’ll probably have questions about your defibrillator, especially at first—and you should ask them. You’ll still be the same person. And you’ll have peace of mind because your device will be with you day and night to help keep your heart rhythm normal.

Note: Individual symptoms, situations, circumstances, and results may vary. Please consult your physician or qualified health care provider regarding your condition and appropriate medical treatment. The information provided is not intended to be used for medical diagnosis or treatment or as a substitute for professional medical advice.

Talk to your doctor about important safety information.

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Learn More

Defibrillator (ICD) Patients—FAQ—Answers questions about living with your Boston Scientific defibrillator.