School and children with heart disease

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Learn how congenital heart disease can affect a child’s experience in school.

Key points

  • A heart condition will often have some impact on a student’s performance at school, both in and out of the classroom.
  • Teachers should be aware of any restrictions on physical activity a student has because of a heart condition.
  • Teachers should understand that heart surgery will be disruptive to the student's school work and may also have other physical and behavioural effects.
  • By co-ordinating with the student's parents and staff at the child’s cardiac clinic, teachers can help children with heart conditions succeed.

This page explains how congenital heart disease can affect your child's academic performance, and outlines ways you can prepare your child for their return to school.

How will your child do at school?

Most children with simple heart defects do not require any special care when they attend school. Those with more complicated heart defects, however, may show signs that occasionally require attention. These signs include:

  • Cyanosis: This is a blueness of the lips and nail beds that may increase with exercise but should not bother the student. It is caused by reduced oxygen in the blood flow to the body.
  • Increased fatigue: Children may tire more easily or may be short of breath after exercise.
  • Increased susceptibility to chest infections: Students may be more likely to get common respiratory infections such as bronchitis and pneumonia. In some types of heart disease, too much blood reaches the lungs, making them more susceptible to infection.
  • Small size: Students with heart defects may be shorter or lighter than their classmates. Many children with congenital heart defects have difficulty gaining weight.

If a CHD or its treatment has had a negative impact on cognitive development, this will become apparent at school age when children have to meet specific cognitive and social benchmarks. This is more likely in a child with a complex heart condition. For example, a child with a severe form of congenital heart disease, and has undergone a procedure such as a Fontan operation is likely to require extra care or special attention at school. Children with transposition of the great arteries show lower overall scores on arithmetic, learning, and general knowledge tests. In general, children with cyanotic defects and hypoplastic left heart syndrome appear to have lower abilities in math, reading, and spelling. One study showed that about one in three children with a complex CHD requires extra help in school, and another found that about 15% were assigned to a special education classroom. A child with CHD might be more likely to be inattentive or hyperactive in the classroom. For these reasons, and other secondary consequences of a CHD such as missing multiple classes for doctor’s visits or surgery, or having overprotective parents, about 1 in 10 children with severe CHD will need to repeat a grade.

What your child’s teacher needs to know

It is important that teachers know the nature of a student’s heart condition and the implications it has for school activities. For example, if there are only five minutes between classes but a child with a heart condition needs ten minutes to travel from one class to another, arrangements should be made to give the child the extra time to get to class and not be penalized for taking a few extra minutes. Parents, cardiology clinic nurses, and physicians can provide you with information about the student’s health, permitted activity level, medications, and future treatment.

Your child’s permitted activity level

Permitted activity levels are determined by your child’s health care team. In general, activity restrictions are graded in the following manner:

  • Full: The child is allowed to exercise at will and participate fully in all sports.
  • No competitive sports: The child is allowed to exercise but is not allowed to participate in races, organized games, or team sports.
  • Restricted: Please obtain specific guidelines from your child’s doctor.

If you have any questions about any activity restrictions, please contact your child’s doctor, or speak to the staff at your child’s cardiac clinic.

Your child’s medications at school

Medication is usually taken at home. In cases where children need to take some medication while at school, it is helpful to make arrangements with school board officials. The teacher should be kept informed of the medications your child is taking and of their specific purpose.

Keeping your child’s teacher informed

Continuing contact with your child’s teachers will keep them informed about plans, if any, for your child’s future hospitalization. This information can help the teacher identify and respond to your child’s needs and concerns. The prospect of hospitalization or surgery may create anxiety, which sometimes results in changes in behaviour and performance at school.

What to do if your child is going for surgery

To help your child prepare for surgery, you may want to discuss the date of surgery, the reason for it, the proposed length of hospitalization, and the time needed to recover before they can return to school. You can also share this information with your child’s teacher and determine whether it is all right for the teacher to discuss the surgery with your child or their classmates.

In order to maintain a degree of normalcy in the child’s life, many hospitals have a teacher on staff to help your child keep up with their schoolwork. If your child is going to be in hospital longer than two weeks, continuation of schoolwork can at times be arranged.

A child in hospital can benefit from contact with their classmates. Speak to your child’s teacher about ways your child’s classmates can get involved. It can take the form of get-well cards or audio cassettes sent to the hospital, or visits once the patient has returned home.

Returning to school after surgery: notes for teachers

Generally, children recover at home for about two weeks following heart surgery. A gradual return to school and other normal activities is usually the recommendation. For example, a student may initially attend classes for half days for the first few days back at school.

Possible behavioural changes

You may see an improvement in the energy or activity level of a child after surgery. It is important for you to discuss with parents, or, together with the parents, speak to the medical or nursing staff at the child's cardiac clinic regarding any changes in the limitations placed on the student’s activities.

You may encounter some behaviour changes when the child returns to school. These changes may occur in response to hospitalization and surgery and are usually temporary. Some children will require more of your time and attention than before surgery. Others experience nightmares and disrupted sleep patterns, and tire more quickly than usual. All these things may affect their school behaviour.

Possible physical and mental effects due to surgery

Depending on the type and difficulty of the surgery, some students may experience vision problems, neurological impairments, or gross and fine motor delays. This may be more common following open-heart surgery. These deficits can affect a child’s everyday functioning and social and emotional well-being. Prompt identification of deficits in any of these areas can lead to early interventions and improved outcomes.

Support from teachers and the school board

Students with a congenital heart condition need your support to develop their full academic potential, since physical limitations may exclude them from certain types of employment. Your help is essential. If a student has any special needs arising from a cardiac problem, they should be referred for review by the appropriate school or board committee. Please discuss your student’s needs with the parents or, together with the parents, speak to the medical or nursing staff at the child's cardiac clinic.

What can be done if your child is having problems learning

Experience has shown that the best way to teach children is using direct, one-on-one instruction. If your child is currently not getting extra resources at school, find out what they are entitled to have and try to find ways to make sure they get help when needed.

Early intervention is important. In some cases, meeting with a neuropsychologist can be helpful. The doctor can do some testing and determine where problems may lie and provide you with information. In general, children in Kindergarten and Grade 1 need to develop their basic reading, writing, and math skills as much as they can – even beyond what their classmates are doing. Extra tutoring or other supports are important even at this stage, before you see any changes.

In the classroom setting, discuss the following suggestions with teachers:

  • Seat your child near the front of the classroom to help focus and avoid distraction.
  • Provide less written work.
  • Use visual tools to teach such as charts and illustrations.
  • Use tape-recorded textbooks.
  • Allow extra time for tests and assignments.
  • Provide extra help with problem areas.
  • Develop a modified learning regime.
  • Provide special education.
  • Ask the teacher to “check in” with your child each day to see how they are doing.

In some instances, special education may be required. Older children who are having difficulty in school may do well in a special vocational program at the high school level.

At home, children can benefit from an environment rich in language and numbers. As much as possible, reading lots of stories, doing number rhymes and counting together, and working on math and reading exercise books will help. School-aged siblings may be able to help as well. Teachers or a school liaison person may be able to recommend good resources to use at home.

Finally, you can help your child find a skill, interest or hobby at which they can excel. For example, your child’s creativity in art, dance or a musical instrument may be the same or even greater than other children. Focus on your child’s successes.

Children may find it difficult to learn a second or third language. This may be an issue for families who speak more than one language, or who do not speak English at home. Your child’s treatment team may have suggestions to deal with this issue.

Some of the learning problems that children can experience are:

  • handwriting problems
  • spelling problems
  • reading problems
  • math problems
  • Attention and concentration problems such as when a child may be inattentive, hyperactive, or both. They may not be able to concentrate for extended periods of time.
  • Slowness in completing tasks compared to other children.
  • Memory difficulties. For example, a child may study a topic, but not remember it the next day.
  • Difficulty planning and organizing, such as when a child has difficulty finishing assignments, expressing ideas in writing or verbally, or finding the way to school.

The emotional impact of learning problems

Although the majority of children with CHD seem to function at a normal level, there are some children who are at a greater risk of developing emotional problems. If your child develops learning problems as a result of their heart condition or its treatment, they may become frustrated or angry with themselves. Tasks that they once did routinely may become more difficult. They may see their classmates moving ahead at a faster pace than he can. When that anger is unexpressed, anxiety or depression may result. Children’s difficulties in school may not be clearly evident in the classroom since many children who have CHD internalize their emotions and keep any anxiety or fears to themselves.

It can be helpful to talk to your child about these problems, to understand how they feel and to figure out how you can help deal with any issues. Some other ideas that may help your child are:

  • Focus on your child’s skills and talents. This can help enhance creativity. Consider providing opportunities for them to show off their skills.
  • Advocate for your child in school. Creating a supportive environment in school with their teacher and classmates will make it easier for your child. Their learning will be assisted when extra supports are available.
  • Emphasize your child’s personality. Rather than focusing on grades, praise your child’s behaviour and efforts when appropriate.

Healthy parents, healthy children

Parental attitude and family support in meeting the CHD child’s psychological and emotional needs are just as important – and sometimes more – than the medical care and education a child receives. The parents' perspective can play an important role in the children’s long-term emotional development and psychological adjustment. For example, an overprotective or overly anxious parent can unintentionally hinder a child’s development. Therefore, it is important that the parent be guided and informed by a health care provider during each stage of the child’s development.

It is also important to monitor the parents' health, since parental well-being appears to be related to psychological adjustment in CHD children. This is especially important since parents of children with CHD were generally at higher risk of distress and hopelessness than parents of healthy children.

Last updated: December 14th 2009