Children's Cardiomyopathy Foundation



Before the school year begins, schedule a meeting with your child's teachers, school administrator, guidance counselor and school nurse to explain your child's condition and treatment. It is important to develop a cooperative relationship with school officials and teachers so that they can help your child continue to learn using the most appropriate programs. Make a list of points that you want to cover, including any special requests. Topics to cover might include academic issues resulting from illness and fatigue, social issues resulting from being different (too weak, too small, or cannot participate in sports), and practical issues (special dietary needs, medications, restrictions on gym classes, availability of external defibrillators).

If you have a school age child that needs to be hospitalized, you may need to make special arrangements with the school such as make-up assignments to be done away from school, extra tutoring in missed subjects and possibly shortened school days immediately following hospitalization. A couple of weeks after your child returns to school, you may wish to follow up with his/her teachers to find out how he/she is adjusting. On occasion, children behave differently in school than at home.

Here are some additional tips on how to educate the school staff about the special needs and circumstances of your child.

  • Ask your child's physician to write a letter briefly explaining his condition and giving specific guidelines about acceptable and unacceptable activities. Depending on your child's age, this may include gym, playground or sports restrictions. Or ask your child's physician to complete a standardized medical form that gives a concise but comprehensive summary of your child's condition.
  • The school nurse needs to be fully armed with enough information to keep your child safe and healthy. This includes an understanding of your child's medical condition and treatments (i.e. medication schedule or previous medical procedures), the contact numbers of your child's physicians, and a list of signs and symptoms to watch out for (i.e. possible side effects from medication, signs of heart failure or cardiac arrest).
  • For children that need to take medication during school hours, you may need to arrange a place such as the nurse's office where the medication can be stored (some need to be refrigerated) and taken at prescribed times. For younger children, you may need to ask the nurse or teacher to administer it.
  • The school nurse, teachers and staff (i.e. administrative, lunchtime supervisors) should know how to react in the event of a cardiac emergency. It is important that teachers be briefed on emergency protocol, emergency numbers to call and the usage of appropriate medical equipment. Due to the increased focus on school deaths related to sudden cardiac arrests, certain states have passed legislation requiring schools to carry external defibrillators. If your child's school does not have one, you should speak to school officials about obtaining one. There are various automatic external defibrillator (AED) manufacturers and non-profits that can assist schools in obtaining an AED.
  • Your school counselor and teacher should be aware of possible social issues related to your child's condition. Because your child may be limited in their participation or be smaller in size, they may be more prone to teasing or bullying by other children. Enlist the help of your child's teachers to educate your child's peer groups on cardiomyopathy.