For Parents

Communicating with Schools and Teachers

Communication between parents, children, and their school is essential to optimize a child’s education, physical development, and social development.

Peer interactions are vital for children with a heart condition, and school is an often where much of their socialization takes place.

Meeting with Teachers

Meeting with teachers and members of the school system prior to the beginning of the school year is an important step in order to introduce your child, explain his or her heart defect, and associated information.

It is important that you and your family work together with teachers to support and educate each other. At minimum, children with CHD should have a Health Plan on file with their school. Children with CHD and specific limitations, needs, or learning disabilities may require a 504 plan or Individualized Education Plan (IEP).

It is important to work collaboratively as a team.


Parents are truly the experts when it comes to identifying their child’s strengths, weaknesses, and capabilities. Parents are typically the primary caregivers and will need to entrust the education and well-being of their child, during the school hours, to their child’s teachers and academic leaders. Scheduled communication and/or contact during the school year may clarify and reinforce your child’s needs and progress. Important information to share with teachers are the physical capabilities and limitations of the child, any medicine to be administered at school, and any other information such as expected absences for doctor appointments and to whom information can be given.

Teachers/School Administration/School Nurses

Teachers are not medically trained and may not even realize that children can have heart problems. Because there are sometimes very few outward signs of a heart condition, teachers may need to hear about your child’s condition multiple times in order for them to fully understand the child’s physical and emotional needs and/or limitations. Teachers should communicate as often as necessary with parents so that they feel comfortable understanding your child’s condition and/or symptoms. They may feel overwhelmed with the responsibility of having a child with a heart condition in their class or may have other children with special needs in their class as well. It is important for teachers to feel informed and confident that they are able to treat children equally while meeting their social and educational needs.


Children, especially if they are going to school for the first time, don’t typically understand ‘normal’ and ‘abnormal’. They usually don’t want to be labeled as different and would like to participate with the other children as much as possible. Sometimes limitations need to be set to protect children, despite their wishes to do everything to fit in. Other children may be worried that they have to do activities they are scared about doing. When appropriate, the child should be present at meetings and be aware of the discussions and decisions that are made during the meeting.

In order to create the best school environment possible, teachers, parents and the child need to work together and support one another.

During meetings, there are five areas that should be addressed:

  1. Competence
  2. Communication
  3. Consistency
  4. Confidentiality
  5. Compassion

Specific areas to address:

Parents Can:
  • Provide specific behavior and appearance expectations that are normal for the child and those that should cause concern
  • Provide an opportunity for the school to meet with medical professionals to answer questions and provide guidelines.
Teachers/School Administration/School Nurses Can:
  • Learn all they can about the child’s condition (you can help provide information)
  • Become familiar with the child’s normal activity and appearance and what concerning symptoms to watch for
  • Develop an effective emergency plan (Health Plan)
  • Review CPR and first aid training
Parents Can:
  • Recognize that teachers have the needs of many children to consider
  • Meet with the teachers for plans on absences (short or long term) and homework
  • Keep teachers informed of any changes at home with medicines, a bad night, etc.
Teachers/School Administration/School Nurses Can:
  • Recognize that parents are the expert and listen to their concerns
  • Be flexible with homework if needed
  • Invite parents to volunteer in the classroom or field trips
  • Inform parents of special activities that are out of the norm for a typical school day
  • Keep parents informed of a bad day at school or if something out of the ordinary occurred
Parents Can:
  • Get to know all of the child’s teachers, school nurse, and other school staff
  • Provide copies of health records as needed
  • Assure that the list of medicines and emergency information is correct and kept up-to-date
Teachers/School Administration/School Nurses Can:
  • Make sure the following are aware of all the plans in place: Art, Music and Physical Education teachers; Substitute teachers; Administrators; School nurses; Lunchroom and Playground staff
Parents Can:
  • Talk with teachers about sharing medical information and with whom
  • Work with teachers on the most appropriate time and way to describe the information with others
Teachers/School Administration/School Nurses Can:
  • Obtain consent/assent prior to sharing information with other school staff, students and parents
  • Work with parents on the most appropriate time and way to describe the information with others
Parents Can:
  • Volunteer at school and be open to suggestions
  • Work with the teacher to see if more information about the child needs to be discussed with classmates
Teachers/School Administration/School Nurses Can:
  • Help the child to feel normal and included
  • Be observant of the child’s appearance, health and behavior

Specific suggestions for planning the care and accommodation for your child, if needed:


  • Participate in PE in a manner that the student can tolerate (allowed to rest, be the scorekeeper if not able to do the activity)
  • Use of elevator if available
  • Rolling back packs
  • Set of books at home or books available online

Educational Needs

  • More time to take tests
  • Individual Education Plan (IEP)
  • Less homework (5 math problems instead of 10)
  • Use of a scribe
  • Larger font in textbooks, having passages read to student

Personal Needs

  • Allow a water bottle at desk
  • More time to walk to class or allow student to wait until crowd has dissipated
  • Time medications with lunch or class change
  • Comfort level with confidentiality issues

Make sure teachers understand how to recognize an emergency:

Instruct the teachers when to call you with questions and when to call 911.  Explain which behaviors and symptoms are normal and which are not:

  • “Sometimes my son’s lips turn blue. If he is not having trouble breathing or complaining of tiredness or pain, he should be fine with rest”.
  • “If my child is complaining of chest pain, difficulty breathing, doesn’t improve with rest or collapses, call 911.”

When discussing your child’s health accommodations, remember to use simple terms: “My child is missing two of the four chambers of his heart”.

Helpful Resources


Nutrition and Activity

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Coping with Chronic Illness