Congenital heart disease and education

(© Diego García Márquez)

In addition to the family, school is the main environment for the cognitive, psychic, emotional and social development of a child. Given that education is essential to ensure the healthy progression of the child’s faculties and potential, it is even more crucial when a child is ill. Thus, the teacher plays a key part in the healthy development of a child with congenital heart disease.

For the work of the teacher to be most effective, it has to be based on two factors. First, the teacher should be duly informed of the condition of the child, and second, the family, school and hospital need to coordinate with each other effectively.

Thus, suitably informing the teacher means that:

  • they will not be afraid or anxious of what the illness might produce, or worry that they might prompt improper treatment of the pupil;
  • they will become the main ally of the family and health personnel, since given their daily and direct contact with the child they can rapidly detect any possible health problem; and
  • they will be able to duly inform the rest of the classmates of the child’s condition. On the basis of the age and characteristics of the pupils in the class, the teacher should select the best way to present the issue, thus putting a stop to the fear of the unknown, which is often the cause of rejection. The teacher should answer all questions and maintain a positive tone throughout.

Most children with heart disease can lead a practically normal life, and therefore they should not be treated differently from any other child at school. However, to ensure that their school life is as normal as possible, some specific measures might need to be implemented, which will be based on three basic factors: the frequency and length of visits to hospital; whether the child needs to take medication and the characteristics of this medication; and whether the child has physical or neurological limitations that might need curriculum modifications.

Since congenital heart disease covers several heart disorders of diverse nature and seriousness, and because the response of each child to treatment differs, we are going to analyse the effect that these factors can have on school life and the way that they can be compensated for.

Hospital and school

We should not forget that in all childhood chronic illnesses, school is one of the fundamental pillars to prevent the child from becoming isolated and to ensure their integration into the adult social environment in the future.

However, children with heart disease have to attend hospital frequently, either for check-ups or for surgery, and as a result will have a higher number of days absent from school than the average pupil. Thus, the necessary measures have to be put into practice to prevent the possible consequences that can arise from absenteeism, and to prevent inadequate reintegration into the school environment after surgery. Therefore, the teacher must be kept informed of the hospital-care schedule for the pupil: frequency of visits, admissions to hospital and their anticipated duration. With the consent from medical personnel, the child should be kept away from school for the shortest time possible. When a long stay at hospital is necessary, and the child’s disorder allows, he or she could continue his or her schooling in the hospital classroom.

The main objectives of the teacher during the admission to hospital will be to keep the child integrated in his or her class group by encouraging contacts with friends and other teachers, and to continue whenever possible the educational process of the child and establish suitable procedures to assess and grade their work.

The objective of the hospital-based teacher will be to continue, as far as possible, the work that the pupil was doing in school. This teacher should aim to be in direct and continuous contact with the child’s school teacher to adapt the curriculum requirements to the new circumstances. The value of the hospital classroom is also important in providing the child with a normal life; through interacting and playing with other children, the child can disperse tension.

Once the child is discharged from the hospital and if his or her return to normal schooling is still not recommended, the educational process could be continued by distance learning or by home help, which will require greater involvement of the family.

Every child has the right to continue attending class, as far as it is possible, or to continue receiving education in hospital or at home. To convert this right into a reality, the first and essential element is that all parties involved in the child’s development—parents, hospital staff, school, friends, etc—understand the importance of education and make all resources available. Suitable channels of communication should be established between all those who participate in the educational development of the child. By fluid, open and reciprocal communication, the child has to find the best way to express their desires once they have understood the natural restrictions that their heart disease imposes.

It is important to maintain communication not only between the family and teacher while the child attends school regularly but also between them and the doctors and hospital-based teachers while the child is admitted to hospital. Maintaining fluid communication between these four players is crucial when the child is going to be re-integrated into school after admission to hospital. The physical and psychological experience that the child has in hospital might mean that some feelings could have surfaced affecting his or her behaviour in school. Therefore, the teacher has to be informed again of possible changes that could affect social integration, such as physical changes, character changes, loss of appetite, changes in medication, increase in number of hospital visits, gain or loss of weight and implantation of any device (eg, pacemakers).

Children need to return to their daily routine. To do so they need to be sure that in school, and above all among their classmates, they are seen as before and are treated just like everyone else, and that they are accepted as they are, despite any physical change that might have occurred. Children with heart disease might be afraid to face their friends because of the fear of possible rejection, possibly because of their appearance or simply because they have been away for a long time. Introversion and shyness can be apparent because of the fear of physical contact in games or interaction with friends, particularly if doctors have forbidden the child from taking part in physical exercises or sports. The teacher should be especially vigilant in these situations, since despite appearances the child might have a strong feeling of insecurity, fragility and vulnerability, which could even lead to depression.

If the children have continued their relationships with friends and have kept to a predefined work pace, reintegration into the class will be much simpler; the reunion could be the reason for a party. Thus, the role of the teacher is essential at this time, since they can ensure that the reunion with the class will be a satisfactory experience that is managed in a way to guarantee the return to normal life for the child. To organise this reunion, the teacher should meet up with the parents and the pupil to establish the procedure to follow and the information that is going to be given to the rest of the class.

In the weeks and months after their return, the teacher should continue to watch for signs of possible problems that could appear surreptitiously after a substantial drop in academic performance (not due to absenteeism), such as aggressive or withdrawn behaviour, greater anxiety or social isolation.


(© Diego García Márquez)

Children with heart disease might have to take controlled and regular medication during school hours; therefore, knowledge of the pharmacological treatment that the pupil has to follow is essential for the teacher. A copy of the report from the cardiologist who treats the child could be provided to the teacher for information. In most cases the medication has no effect on school life. When children take diuretic drugs as a means of eliminating excess fluids, they will possibly have to go to the toilet more often and urgently, meaning that the teacher must take this into account when a child with heart disease asks to go to the toilet. The teacher also has to know whether the child is taking any medication that might affect their performance or behaviour in class.

Knowledge of the child’s progression and any possible complications or secondary effects that could arise from the medication reinforces the teacher’s feeling of security, as well as that of the family, who will be able to rely on the teacher as an ally to detect any possible anomaly in their child at the time.

Academic life

The teacher, as the adult who is responsible for the education of the child in school, has to avoid being overprotective, since this behaviour tends to discriminate the child by making him or her feel special or different. Teachers need to show support for children with heart disease that does not conflict with giving their classmates equal treatment. Thus, the teacher has to take a non-discriminatory approach that integrates the child. If problems or difficulties arise in adaptation and in learning, the child might need to be referred to the school psychology team (if available) in the education centre.

When in school, the teacher will be responsible for identifying, at an academic level, whether delays in development appear or whether the child exhibits any language problems that need specific support. The teacher, like the parents, should pay special attention to the educational development of the children in accordance with their age. Up to 4 years of age, difficulties in pronunciation, changes in sounds, omission of sounds and desire to imitate sounds without managing to do so, will have to be assessed, and as a preventive measure for possible problems in written language, difficulties in picking up objects, motor function difficulties and muscle dystonia (particularly hands) should be monitored. From 4 years upwards, more objective assessment and diagnoses can be possible depending on the cooperation of the child. In children aged between 4 and 16 years, the assessment, diagnosis and treatment will be directed at establishing the intellectual level, learning problems and behavioural problems arising from language difficulties (insecurity, withdrawal, etc).

From 16 years of age and older, in addition to academic performance, attention and concentration difficulties and lack of motivation are also assessed. In adolescence, the risk of a negative effect on the personality of the child is greatest; therefore any action embarked on has to be weighed up very carefully. The work of the teacher at this stage should be basically centred on:

  • Academic orientation depending on their abilities
  • Training in social skills
  • Training in techniques to reduce anxiety
  • Self-control techniques
  • Study techniques
  • Making decisions and problem solving
  • Parent education in adolescent behaviour management

The teacher and the family should take into account that at this stage of the child’s life, it is essential to ensure that they accept their illness so that suitable and informed decisions can be made for issues such as drugs, alcohol and sexual relationships, which are crucial for their health and social wellbeing.

If the child with heart disease has academic problems, a curriculum intervention with school support and reinforcement classes could be necessary.

Physical education

Another issue concerning teachers who have children with congenital heart disease in their classrooms is the level of physical activity that these children can undertake. Generally, the child with heart disease cannot work at the same rate as other children of their age. To establish the level of recommended exercise in each case, the physical-education teacher has to have detailed information from the cardiologist treating the child, stating in detail which physical activities that the child affected can and cannot do. The report should also include the physical ability of the child, as well as blood pressure behaviour and the presence of electrocardiogram (ECG) changes, particularly arrhythmias. To produce this report, controlled-effort tests will be undertaken.

Given the importance of the fact that the children, despite their limitations, want to feel integrated into the class, the teacher should strive to find activities that they might be able to do. Some parts of the physical-education curriculum are very beneficial to pupils with cardiac disease, not only from a physical aspect, but also from the point of view of forming personal relationships. For example, coordination exercises, artistic expression or psychomotor exercises will have a very positive effect on the child. If children are in recovery after surgery, the physical exercise recommended by the cardiologist will become fundamental for their improvement, in addition to the correct medication and a suitable diet.

If the restrictions are substantial, the pupils could be assigned the role of helper to the teacher. This activity should be undertaken in a way that the child does not feel excluded and knows that he or she has an important part to play in class.

Children with heart disease should not run for long periods of time given that they have a lower physical and lung capacity than that of their classmates. Therefore, physical activity should not be expected of them when temperatures are low because their body will heat up while running. They should be allowed to stay in warm places, not only during any outside classes, but also at break times in winter, if they request to be allowed to do so.

Physical-education teachers, and the rest of the teachers who work with the child, are often worried that the child with heart disease might faint during classes. However, fainting occurs rarely. Some children have a very slow pulse, increasing their risk of fainting; this is corrected by a pacemaker situated inside the body. If a child faints, the immediate treatment to follow is to keep him or her lying down or sitting, depending on which position is more comfortable. Communication between the teacher, the child’s parents, and with the child’s doctor is essential, and should be free flowing to know the correct protocol to follow at those times.

School and the family

(© Diego García Márquez)

We should not forget that family members can be the main people responsible for their child’s education as a last resort. The performance of the parents in the family environment will depend to a great extent on the success of the teaching staff at school. The family should avoid falling into one of the following two extremes when educating their children.

First is the so-called protection model, in which the parents, motivated by the fear that their child’s disease might progress, overprotect them. In this situation the parents should work to increase their self-confidence and that of their children, to give them more autonomy and boost their self-esteem. 

The second educational model to avoid is that of denial. In this extreme, the parents do not accept the disease and behave as though nothing has happened; therefore the children receive contradictory messages, since their education is completely normal but they themselves have to face the difficulties that their disease entails. This model is characterised by an excessively permissive attitude, which is caused by the parents’ fear that their children will not be happy if restrictions are put in place.

These two diametrically opposed educational models are the source of most problems that the teaching staff are faced with in the educational setting of children with heart disease. The family has the responsibility of finding a suitable balance that will make it possible for these children to complete their education in the best way possible.


Although the family has the ultimate responsibility in maintaining the safe emotional environment that a child needs, the whole educational community has a part to play in providing these children with a warm, sensitive and tolerant environment, which is especially important because of the problems that the disease creates for the pupil. In addition to its instructive function, the school has an essential role in the process of social adaptation of children and adolescents, which is an inherent aspect common to the evolutionary development of all human beings.

Teachers must, along with their good work in imparting knowledge, manage the emotional aspects of the child’s development, and ensure that they understand new concepts. Furthermore, they should reinforce the development of relationships that are vital for overall growth. At the same time, teachers should avoid providing overprotective special care, which could make the child feel like an invalid and would not help in his normal evolutionary process, and could provoke a negative scenario of overprotection and infantilism. Most children want to be treated like everyone else and feel uncomfortable when the teachers are overprotective towards them. However, it is very important to define an open and flexible curriculum framework enabling the schools to adapt the education to the pupils’ individual needs.

Reviewed by: Gertrud Ek
Last updated: 2008-09-22

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Comments on this article

18.02.2009 | Monika Schraudy, Germany
I find it very difficult to decide whether I should send my son to a normal school and ask the youth welfare office for a integration assistant or if a school for physically handicapped kids makes life and education easier for him. What are your experiences? When the kids are searching for apprenticeship training positions after finishing handicapped kids school: do they have to fight against prejudices?
25.01.2010 | Sandra Sauer, Deutschland
ich finde es sehr, sehr schwer überhaupt erstmal die richtige Schule zu finden. Meine Tochter hat zu dem Herzfehler noch einen Hirninfarkt erlitten und hat Epilepsie. So sieht man ihr nichts an, aber durch den Infarkt klappt es mit einer Regelschule nicht. Sie wechselte nun auf eine Förderschule lernen. Dort kommt sie auch nicht richtig klar (es sind dort auch schwererziehbare Kinder). Es ist wirklich sehr, sehr schwer. Durch den Wechsel mag sie die Schule gar nicht mehr und geht total ungerne hin. Aber welche Schule ist die Richtige?
06.05.2010 | Katrin Laud, deutschland
Mir geht es genauso. Die wollen mein herzkrankes Kind in die Förderschule schicken. Das ist absoluter Schwachsinn. Ich wehre mich schon Jahre dagegen.
11.08.2010 | Sandra Weißbrich, Deutschland
Hallo, genauso wie ihr finde ich es völlig Schwachsinn ein Kind in die Förderschule schicken zu wollen, nur weil es einen Herzfehler hat. Ich selbst habe einen angeborenen Herzfehler und bin 29 Jahre alt. Ich habe an der Regelschule mein Abitur gemacht, eine Ausbildung als Kinderkrankenschwester abgeschlossen und im letzten Jahr meine Zusatzausbildung als Fachlehrerin für Förderschulen abgeschlossen. Ich finde es wichtig Eltern darüber zu informieren, das es viele verschiedene Möglichkeiten gibt, das Kind zu unterrichten, man soll bei der Beratung die Förderschulen nicht verschweigen. Sie als Eltern, der behandelnde Arzt und auch die Kindergärtnerinnen kennen ihr Kind zum Zeitpunkt der Einschulung am Besten.
U. a. habe ich auch schon Eltern dazu geraten ihr Kind auf eine Förderschule mit dem Schwerpunkt körperliche und motorische Entwicklung zu schicken. Die Vorteile sind die Lehrerbesetzung und das Kind wird individueller als an der Regelschule gefördert. Diese Schulen unterrichten nach Lehrplan und vergeben ganz normale Schulabschlüsse. Wichtig ist als Eltern und als Lehrer das Kind zu beobachten und wenn der Gesundheitszustand des Kindes es zuläßt einen Wechsel auf die Regelschule anstreben.
Ich wünsche allen Eltern und Kindern viel Erfolg beim Kampf um die richtige Schule.
Wie ich selbst bei mir erleben konnte klappt es auch auf der Regelschule ohne Probleme. Wichtig ist nur das der Lehrer um den Herzfehler Bescheid weiß und im ständigen Kontakt mit den Eltern steht.