Working with Your School when Your Child has a Congenital Heart Defect

Ask the Experts by Richard Humes, M.D.

Q: My son is entering school and has a congenital heart defect. Any advice on how to prepare him for school?

A: For many families, preparing for the upcoming school year is a very busy time. But for those with congenital heart defects (CHD), back to school issues can mean much more than where to find the coolest notebooks since their heart condition can have an impact on the student's performance both in and out of the classroom.

CHD is the leading cause of birth defect-associated infant illness and death. Some of the more common defects include holes in the walls between the heart chambers, abnormal valves and abnormalities in the blood vessels entering or leaving the heart.

Fortunately, most children with simple heart defects do not require special care when they attend school.

The Centers for Disease Control (CDC) estimates more than 80% of individuals with a mild CHD have no developmental disabilities. However, more than half of those with a more critical type of CHD have some form of disability or impairment.

School employees must be informed of a student's heart condition and how it may affect school activities. For example, since some kids with CHD can be short of breath after walking, accommodations can be made to allow the child extra time to get to class and not be penalized.

Parents, nurses, and physicians should provide staff with information about the student's health, permitted activity level, medications, and future treatment. 

If a child is going to a new school find out ahead of time if there are access issues such as stairs, bathrooms and transportation which can hinder getting around school. Look for accommodations to make the experience easier for all.

The population of people with CHDs is growing. It's important to make students, parents, teachers and the community aware of the prevalence and signs of these defects so the student's experience in school is optimal. 

Richard Humes, M.D., is chief of Cardiology on staff at Children's Hospital of Michigan at the Detroit Medical Center. For further information on cardiology services at Children's Hospital of Michigan which includes convenient access to services in Clinton Township, Detroit and Troy visit DMC Children's Hospital of Michigan is a member of the Family Center's Association of Professionals.

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