When living with a heart condition, it is important to always be prepared for a medical emergency. Before traveling or attending camp, parents should speak to their child’s pediatric cardiologist and pediatrician to discuss their child’s health. An emergency plan of action should be discussed in case a physician needs to be reached outside of office hours. If your child has a pacemaker or defibrillator, the electrophysiologist should also be notified.

Medical Considerations

There are many factors to consider when taking a vacation, registering for a school trip, or attending summer camp. Beforehand, it is best to identify a hospital near your destination that is equipped to handle a cardiac emergency and have pediatric cardiologists on staff. Caution should be taken when planning trips or participating in camps in remote areas or developing countries where knowledge of cardiomyopathy may be limited. The same concern applies to traveling on cruise ships where the level of medical care may not be advanced enough to handle a cardiac emergency.

You and your child should have easy access to emergency information on insurance coverage, physician phone numbers, and prescriptions. CCF partnered with the New York Mid-Atlantic Consortium (NYMAC) to create an emergency medical card that can easily be downloaded, printed, and laminated to carry in a wallet. The Center for Children with Special Needs also has a portable medical summary that can be filled out, photographed, and kept on your mobile device. The American Academy of Pediatrics' Committee on Pediatric Emergency Medicine offers an Emergency Information Form for Children with Special Health Care Needs. If your child has a medical emergency and must go to an emergency department with an acute illness or injury, these medical forms can be used by emergency medical services (EMS) to expedite treatment.

For families considering summer camp, CCF offers a “Cardiac Camp Listings” fact sheet on CCF Connect. This resource includes listings of pediatric heart camp programs throughout the United States and Canada with programming tailored to pediatric cardiology patients. In the past, CCF has partnered with the American Camp Association to ensure that camp owners and professionals across the U.S. have a cardiac emergency response in place and automatic external defibrillators (AEDs) on premise.

Medical Alert Identification

A medical alert identification (ID) is a simple way to communicate vital health information to medical responders to avoid misdiagnosis. Medical identification informs others of your child’s diagnosis and ensures appropriate and timely medical care from first responders and medical personnel. While there are no specific guidelines on what information should be included in a medical ID, CCF offers a “Emergency Identification Resources” fact sheet on CCF Connect with suggested wording and a list of purchase options. 

Being Prepared

Whether your child is at school, on vacation, or at camp, there should be at least one adult trained in cardiopulmonary resuscitation (CPR) and the use of an automatic external defibrillator (AED). The school or camp nurse should know your child’s current medications and doctor’s phone number.

Preparing for an emergency also means being able to identify the signs of infection, cardiac arrest, heart failure, or serious drug reaction. Your child, along with anyone he/she is visiting and his/her camp counselors, should be aware of these warning signs for calling 911.

  • Bluish tint to the skin or very pale complexion
  • Difficulty breathing
  • Sluggishness or lack of responsiveness (appears like a "rag doll")
  • Trembling or seizures
  • High fever or very cold extremities
  • Heavy sweating
  • Persistent chest pain, pressure or discomfort that is unrelieved by rest or change of position
  • Feeling faint or dizzy
  • Abnormally fast or weak pulse
  • Unexpected neurological or behavioral problems (related to speech, vision, hearing and loss of balance/coordination)

CCF offers a “Travel Considerations for Pediatric Cardiomyopathy” fact sheet on CCF Connect that provides practical travel suggestions. For travel resources, visit our Travel & Emergency Preparedness page under the Additional Resources section for a listing of medical transportation and lodging options.