• Living with Congenital Heart Disease: Preschool, Elementary School & Middle School


    The goal in treating children with congenital heart disease is that they will lead a typical life, which usually includes school experience. Many schools will be able to direct you to staff who can assist in meeting your child’s medical needs during the school day and in determining what paperwork needs to be completed, including an IEP. Your child’s pediatric cardiologist, pediatrician, nurses and social workers can also assist you in finding out what you need to know about supporting your child’s school needs. Read on for tips that can help ensure your child’s school experience is as seamless as possible.

    Time management. Time management skills can go a long way in helping your child achieve the same educational experience as his or her peers. Overall, a goal of treating congenital heart disease is that your child has the same school attendance as a child without heart disease. Toward this goal, parents can try to group office visits to multiple providers on the same day to limit school absences.

    Post-procedure activity restrictions. A common concern among parents is acceptable activity levels for their child at school immediately following a surgical or interventional procedure. Any restrictions on your child’s activity level will vary based on the surgery or intervention that was performed. Before leaving the hospital, you can discuss school-related concerns such as the following with your child’s medical provider:

    • When can my child return to school?
    • When can my child participate in gym class?
    • Is it safe for my child to resume playing sports? If so, when?
    • Are there activities that my child should not participate in – and for how long?
    • When is it okay for my child to resume a swim program (or other activities that might expose incisions to water)?

    Before your child returns to school, be sure to contact the school to find out whom you need to speak with and what forms you may need to complete. These important steps are to make sure teachers and staff are aware of your child’s restrictions and know how to help to keep him or her safe.

    Preparing medical information sheets. Your child’s school likely maintains health records and will send out a yearly medical information sheet. These sheets give you the opportunity to update the school about any medications your child is taking or procedures he or she has undergone. Be sure to give accurate, detailed information about dosage and frequency requirements for any medications to be administered by a school nurse. In addition, please share with the school nurse any tips or “tricks” you do at home in order to administer the medication.

    Keeping good medical records at home will make it much easier for you to fill out school forms each year. You can request copies of your child’s medical records from your hospital or any treating physicians’ offices. You may be charged a small fee for copying and mailing the records. Mended Little Hearts – an organization devoted to helping families of children with congenital heart defects – has a form that can help you organize information about your child’s providers, medications, and procedures in one place: the MLH Path Pack.

    Developing an emergency plan. Your child will spend most of the day in school, so it is important that school staff members have clear instructions on what do in case your child has a medical emergency. Create an emergency plan with the school administration. This plan should include who to call and what immediate measures the school can take in case of an emergency.

    Staff training in use of automated external defibrillators (AEDs) and cardiopulmonary resuscitation (CPR).AEDs are portable devices that can determine if the electrical activity of the heart is abnormal and can reset it to a normal rhythm using a quick electrical shock. When enrolling your child in school, find out if AEDs are available on site and where they are located. Ask what the school policies are for their use and how the staff are trained to use them. Basic CPR can help keep a person alive until medical help arrives. Anyone can receive training on how to do CPR effectively. Become familiar with your school’s policies for CPR training for their staff. If your child has special needs relating to a heart condition, make sure that appropriate school staff are aware of them as well.

    School nurse administration of medications.If your child must have medications administered during the school day, you can arrange to have a school nurse do so. You will be asked to fill out a consent form that lists dosage information for each medication. This form will need to be signed by the prescribing physician, and you will be asked to provide consent in order to allow the school nurse and prescribing physician to share the information. This is a measure to ensure the safe administration of medication and to be prepared for potential side effects or medical emergencies that may arise.

    504 Plan.This refers to Section 504 of the Rehabilitation Act of 1973, which is designed to protect the rights of individuals with disabilities. In schools, it protects the right to equal access to education in programs that receive federal financial assistance. A 504 Plan outlines items such as the types of medical training school staff may need have to support the needs of the student, what procedures should be followed in the event of a medical emergency, whether the student will be self-administering medication, what kinds of physical activity limitations may be in place for the child, and the dietary and other types of accommodations that will enable equal access to education.

    A 504 Plan can include things as simple as being allowed to go to the bathroom whenever necessary or carrying fluid to drink. It allows the teachers to know about your child’s condition so it doesn’t have to disrupt the class or bring extra unwanted attention to the child.

    Individualized education program (IEP). Some children with congenital heart disease will also have cognitive disabilities. If your child is enrolled in a school that receives federal funds, he or she may be eligible for an Individualized Education Program (IEP). An IEP is a structured educational plan that determines educational goals for a student over the course of the school year and also provides information pertaining to support services that will be provided in the school for that child. IEPs are mandated in public schools by the Individuals with Disabilities Education Act (IDEA). Students who are assessed as eligible for special education services are required to have an IEP.

    Identifying neurodevelopment issues. Researchers are becoming increasingly aware of neurodevelopment issues in children with congenital heart disease. These neurodevelopment issues consist of developmental disabilities and delays in the cognitive functions of the brain and in the brain’s relationship with emotion, behavior, and motor skills. If you suspect that your child has neurodevelopmental issues, a developmental pediatrician can evaluate your child. Mended Little Hearts, a nonprofit organization devoted to supporting children with congenital heart disease and their families, has a helpful webinar on this topic.

    Managing attention deficit/hyperactivity disorder (ADHD). Although further research is required, it appears that ADHD may be more common among children who have congenital heart disease. While the stimulant medication used to treat ADHD is not recommended for some types of congenital heart disease, it is not contraindicated in all cases. If your child requires stimulant medication, please discuss the benefits and risks of ADHD medication with his or her physician.

    Emotional support for your child. In middle school, it is normal for kids to be concerned about being “different” compared to others. These differences are oftentimes minor, such as clothing or hairstyles. Certainly, medical issues such as congenital heart disease can create even more anxiety. Familiarizing yourself with signs of depression and other mental health issues can help you identify a problem early. Psychological counseling can help your child deal with these issues and others, as necessary.