A Guide for Pediatric Survivors Receiving a Defibrillator Device

Does my child have options with a type of defibrillator?

Since many different causes and situations can lead to cardiac arrest, long-term treatments to prevent another one in the future may vary. A common treatment offered is a wearable cardioverter-defibrillator (WCD) or an implanted device such as a defibrillator or pacemaker. This article provides an overview of these treatments and helpful information about living with these devices.

Wearable Cardioverter-Defibrillator (WCD)

Some survivors may need temporary protection from cardiac arrest when they go home from the hospital. A WCD may be recommended. It is worn on the body underneath clothing. Unlike an automated external defibrillator (AED), this does not require another person to use it in case of cardiac arrest. 

Placement of WCD does not require surgery. It is temporary and can be removed when no longer needed. A WCD can allow your child to leave the hospital and spend time alone while being protected in case of recurrence.

Who might get one?

A WCD may be given to people temporarily at increased risk of cardiac arrest. Examples are situations where doctors want to allow time for the heart to recover or to see if other treatments are working. They would usually only be worn for a short period – weeks to months. After this time, longer-term decisions can be made. Remember all medical situations are different. Your child’s care team can explain why a WCD may make sense for them.

Options for WCDs

There are a few companies that make WCDs. Your child’s doctors may recommend one or they may be presented with choices. You and your loved one can learn more about the different options here: 

• • Zoll LifeVest 
  • Kestra Assure
  • Jewel 

Insurance

WCDs are covered by insurance if your child’s doctor considers it necessary, but insurance coverage can be difficult to navigate. On their insurance plan, a WCD may fall under the category of “Durable Medical Equipment.” There is usually a monthly cost until your child returns the WCD to the device company.    

After the doctor recommends your child wear a WCD, a representative from the company will be available to talk to them along with you and other trusted family members. They can show you and your child the WCD, answer questions, and be good resources for navigating insurance coverage.

Living with a WCD

Despite the peace of mind you get from knowing your child is protected in case of another life-threatening arrhythmia (irregular heart rhythm), the WCD does have some limitations. The device must be fitted to each patient and may not fit all body types well. In addition, WCDs have a minimum size requirement. Your child will need to learn how to respond to alerts to prevent a shock. Therefore, small children may not be eligible for a WCD. It cannot function as a pacemaker and requires daily care and upkeep. The device must be removed for bathing, but no protection is afforded while the device is off. Therefore, caregivers or other persons should be nearby during these periods when the WCD is not worn. Comfort may also be an issue for some people due to the size and weight of the device.

Know who to contact

Keep contact information handy for your child’s care team and the WCD company, for questions and concerns that come up. You and your survivor may also be able to find answers from the materials provided or on the company website.

Implantable cardioverter defibrillators (ICD) and pacemakers

An automatic ICD is a battery-powered device that can detect an abnormal heart rhythm and treat your child by delivering a life-saving therapy in the form of a shock, if needed, to reset the abnormal heart rhythm and prevent another cardiac arrest from happening.

An ICD system includes a generator and wires. The generator is implanted under skin or muscle within the chest, though sometimes it may be in another location such as the abdomen. One or more wires (“leads”) from this device connect to the heart. Some ICDs also function as pacemakers.  

A pacemaker is a device that monitors the heart and sends an electrical impulse when the heart rhythm is interrupted, irregular, or too slow.

Who gets an implanted device?

Some but not all survivors of cardiac arrest may need an implanted device to monitor or treat their heart rhythm. Because of the many different causes that can lead to cardiac arrest, not every survivor will require one. A device may be implanted before your child leaves the hospital if they have an ongoing risk of arrhythmia or abnormal heart rhythm.

Types of implanted devices

There are various kinds of implanted pacemakers and defibrillators including:

• • The “S-ICD” is a type of defibrillator. The S stands for subcutaneous and refers to the fact that the lead is under the skin without touching the heart. Some of the general information about ICDs will apply to the S-ICD, but some questions or concerns your child may have will be specific to this type of device. More information about the S-ICD can be found at Boston Scientific. 
  • A “CRT” is a pacemaker or defibrillator that can do cardiac resynchronization therapy, a type of pacing that can help the heart beat more effectively. These are generally used for people with heart failure. If the CRT is a defibrillator, it will be called a CRT-D.  If the CRT is only a pacemaker, it will be called a CRT-P. It may also be called a “biventricular ICD” or a “biventricular pacemaker.”  
  • There is also a type of pacemaker that is “leadless“ which is a tiny device implanted inside the heart. Read more about 2 kinds of leadless pacemakers: the Medtronic Micra and the Abbott Aveir.  
  • The EV-ICD (Extravascular Implantable Cardioverter Defibrillator) is a small device that is implanted under the skin of the chest and connected to the heart by a lead. The EV-ICD differs from traditional ICDs in that it does not require a lead to be threaded through the veins and into the heart. Instead, it is placed under the ribcage and outside the heart and blood vessels. This is a new technology still in clinical trials. If your child’s hospital is a study site, they could be offered the EV-ICD.

The care team will talk with you about what kind of implanted device would be best for your child. The care team will also support your child as they adjust to life with an implanted device. It is common to feel overwhelmed by all the new terminology and information. You should remember that you do not have to know everything all at once. You and your child will soon get the hang of it and learn to live with this device.

Procedure and recovery

You and your child may have questions about the procedure and recovery. The care team can address your questions and concerns about the surgical procedure (what type of device, how it will be implanted, etc.). All procedures come with risks. If the care team recommends an implanted device, it is because any risks are outweighed by the benefits.

You and your child will be given information on recovery and incision care before discharge. It is important to follow these instructions to ensure they heal well. Your child may have temporary restrictions on bathing or activities while healing. Make sure you know who to contact if you have a question about recovery after going home.

Living with an implanted device

After recovery, living with an implanted device should not have a major effect on your child’s lifestyle. Activities such as exercise will be determined by your cardiologist’s recommendations, not the device. 

Your child’s device will require regular follow-up care, typically every few months. These checks may be done in person at a clinic or hospital, or they may be done from home with a remote monitor or app. If adjustments to their device settings (“programming”) are needed, these will be done in the office. For some devices, a check may include pacing your child’s heart. This is not painful, but it can feel strange. Most device patients find these visits less stressful after they have done them a few times and know what to expect. 

As the ICD is a battery-powered device, the battery life will be monitored at every device check. When needed, a replacement procedure will be scheduled. Replacements are typically minor procedures where your child can go home the same day, though this will depend on their individual situation.   

Many implanted devices have alert tones or vibrations to let the survivor know if something is wrong and if they need to seek care. You should ask your child’s care team about these alerts. While alerts are not common, it is helpful if your child is familiar with the sound, feeling, and how to respond.

Understanding ICD shocks

While shocks can be lifesaving, they can be stressful and confusing for you, your child, and other family members. It is helpful to know how to handle it if or when it happens. Everyone’s experience with an ICD shock is unique. For many, the emotional distress is more challenging than the physical pain and discomfort, which is short-lived. The possibility of getting a shock can also prompt feelings of anxiety, depression, or fear.  Research has shown that having a plan can reduce this anxiety and uncertainty. The care team should provide your loved one with information specific to their situation. Ask for this information if it was not provided at discharge. 

Here are some tips so that you and your child can feel prepared:

• Be educated: You and your child should learn as much as you can about the ICD and how it works. Understanding the purpose of the ICD, how it operates, and how to respond if a shock occurs will help to reduce anxiety and help you cope more effectively. Consider joining a support group of ICD patients or co-survivors.  
• Keep information handy: Three sources of information are important to have available: an ICD identification card, a list of medications, and the doctor’s name and phone number. This information will allow healthcare providers to take the best possible care of your child in an emergency.
• Make an action plan: Preparing for an ICD shock might involve rehearsing what you and your child should do if they were to receive a shock. The doctor may have a specific plan for your child. A sample shock plan can be found here. Your child’s may be similar.

The manufacturer of the survivor’s device is a reliable resource

Once you know what type of device your child will be getting, you may wish to learn more about it. Technology changes rapidly. Unfortunately, there is outdated and incorrect information on the internet. The device manufacturer is the most reliable and up-to-date resource on your child’s device. Be sure to fact-check any information you may read online or hear from people you know.  

General information about devices, how they work, and what household items and medical procedures may require precautions can be found on the manufacturers’ websites:

• • Medtronic 
  • Boston Scientific
  • Abbott/St. Jude
  • Biotronik

Communicating about the device

It is helpful for you, your child, and other family members to know how to explain the situation at hand. For example, when your child sees doctors or dentists, you should tell them about their device so they are aware. A brief description of your child’s implant – for example, “They have a Medtronic pacemaker” – will be helpful. The care team can help your child learn how to talk about their device. 

Your child will also receive an ID card that should remain with them. You can keep a copy in your wallet from the device manufacturer. Some survivors may feel more comfortable wearing medical jewelry in case of emergency.

Know how to contact the care team

Your child’s clinic or hospital that handles their follow-up care will be a good resource for more information about their device, as it applies to their medical situation. 

Learn the best way to contact the care team if you or your survivor has a question or concern. They may prefer calls or electronic messages for non-urgent questions. There may be specific staff members who are your child’s go-to contacts. For example, call device nurse Suzy at xxx-xxx-xxxx and leave a voicemail.

All clinics are different, and you will learn how to navigate your child’s care. It is a good idea for you and trusted family members to keep the contact information handy in a phone or wallet.

Where to find more support

If your child feels distress related to their device or is not coping well after a situation like an ICD shock, you should not hesitate to talk to your child’s care team about needing more support. It may be helpful to work with a mental health professional.  

Your child may also find it helpful to get support from others who live with an implanted device. Their hospital or clinic may offer support groups. They can also find peer support communities online, such as these patient-run grassroots groups on Facebook: 

• • Living with an ICD 
  • Living with the S-ICD 
  • Pacemaker Support Group
  • Orgullo DAI (Spanish ICD group)

Thank you to our contributors

Luis AltamiranoDiaz, Jasmine Wylie, & Fran Lesicko