Education and employment

Having a congenital heart defect raises a lot of questions about education and possible career opportunities. What can findings from research tell us? And if you have a congenital heart defect, what are the important factors to consider when choosing a profession?

Choosing a career

© Cydonna

Make a plan

"What should I be?" is a question that most of us ask ourselves at some time, and often there is no easy answer. Usually we first think about this question in later adolescence, at a time when we are faced with important educational and career choices. It can be a difficult decision to make, and perhaps even harder for young people with congenital heart defects.

Do what you want to do!

Parents of children with congenital heart defects are concerned about the prospects of a good and meaningful working life for their children. These adolescents will, like most teenagers, want a job that they enjoy and find stimulating. Fortunately the minds of both parents and adolescents can be set at ease, because young adults with congenital heart defects can basically do whatever they want to do in life, with a few exceptions.

Think ahead

The opportunity to have a job or career greatly affects our quality of life and our financial and social status. Early studies have shown that young adults with congenital heart defects sometimes have difficulties thinking long term, since many of them worry and are uncertain about how they should feel about the future, or if they even have a future at all.
However, most can look forward to a long life. They can become scientists, journalists, health-care workers, welders, drivers, mechanical engineers, computer engineers, electricians, or just about anything else. But you should think about your options carefully if you have a congenital heart defect and plan long term. You might also consider the opportunities that education can offer in terms of choosing a career. There is no right path and your decisions are very personal to you.


Occupational counselling is resulting in more people remaining active in their careers. Thus, good advice about careers and education is very important. A 2005 British study showed that participation in working life is far greater in those who have received counselling than in those who have not (73% vs 46%). Good career counselling is perhaps the easiest way in which to get even more adults with congenital heart defects working. The counselling should be done at a centre for adults with congenital heart defects or somewhere where people with specialised expertise regarding congenital heart defects can offer advice. Individual interviews with both a cardiologist and career counsellor are recommended. Career counselling should address the importance of education and should chart the physical capabilities of the individual patient. This type of counselling is fairly undeveloped in many European countries and is not available at all in many countries worldwide.


How people with congenital heart defects function at work depends on many factors, just as for anyone else. It is not necessarily true that the more serious the heart defect the more practical challenges that person will encounter in their working life. It is about being able to adapt to needs and to focus on the resources of the particular individual. A study from the Netherlands has shown that roughly half of the participants who had a complicated heart defect had had disease-related problems in their careers, whereas less than 1% of those with simple heart defects had experienced such problems. 50% of these people felt that their heart defect had restricted their career choices, whereas roughly 15% had been excluded from a job or had to give up a job because of their condition. Furthermore, many had lost their job after a medical examination, and some felt that their heart defect had hindered their career advancement. The main reasons that the study participants gave for leaving their employment were that they were physically unsuited to the job, burnt out, or suffered with emotional problems. Many wanted to see simple adaptations that would take their heart defects into account – i.e. more flexible hours, less time pressure, the opportunity to work from home and other such measures that would offer greater freedom to organise their work independently. Many people with healthy hearts probably desire the very same things.

Need for information

Unfortunately, most adolescents know little about their own heart defects. They need to be informed about what their heart defect consists of and the consequences that it might or might not have, not only in terms of choosing a career but for life in general. We must neither exaggerate the challenges associated with simple defects nor underestimate the problems that can arise in complicated cases.

Many people are reluctant to tell employers about their congenital heart defects, and why should they? It is not always relevant, and the way in which the question is asked can easily feel like discrimination. In some countries it is even illegal for employers to ask health-related questions during a job interview. However, it is important to be able to tell an employer or anyone else about one's heart defect, should it be necessary to do so. It is up to the individual to determine just how much to say.

Some British researchers have suggested that knowing that you need life-long monitoring can be inhibiting, which is why some people refrain from applying for jobs. Importantly, provision of information can hopefully dispel such notions.


The effect of education

Both education in general and higher education in particular are well known to have a greater role in determining whether people with functional impairments will enter the working world than is the case for the population as a whole. Studies of people with congenital heart defects have shown that participation in the working world increases with more education, although this is true of everyone, irrespective of their health status. In some studies, individuals with more serious heart defects have less education than those with simpler heart defects. This finding could be due to the fact that their heart defects have a greater effect on their daily lives; however, the average age of the study group was low, and thus many might not have yet reached school age.

More than average

Some countries monitor statistics for congenital heart defects and education levels, although no comprehensive data are available. Some studies from Germany, Sweden, Finland and the UK, for example, show that the education levels are similar to, and often above, the average level for the population. Read more about some of these statistics in the recent research section.
Interestingly, several studies have shown that people with aortic defects seem to be the most highly educated. Other defects that score highly include pulmonary stenosis and ventricular septal defects. However, few studies have investigated each heart defect separately, and we should not put too much into this or make any general statements about the links between heart defect types and education level.


Whether an adolescent manages to complete career training or complete an academic course naturally depends on what that individual has been through earlier in life. Genetics, syndromes, the consequences of treatment, and the heart defect itself can all impose restrictions in terms of the educational choices that are made. This tenet is particularly true for people with very serious heart defects.
Adults with congenital heart defects are motivated to find suitable employment that is consistent with their level of education. The key is to maintain that motivation when they encounter any challenges, such as being advised not to choose the career that they want, difficulties in obtaining insurance, the need for surgery, or an inability to continue working full-time. The options in terms of choosing different types of work can also be expanded substantially through systematic testing of the stresses associated with different careers, job training, and rehabilitation. The report Management of Grown-up Congenital Heart Disease, a European standard prepared by cardiologists, also recommends that physicians and other health-care professionals have direct contact with the patient's prospective employer so that they can provide adequate information.

Working life


The proportion of the population who are in employment differs from country to country, and changes over time. Figures vary, but usually 70-85% of the population is employed. Participation in working life is likely to be correlated with both unemployment and welfare systems in individual countries. Countries that have good welfare schemes presumably have more people who receive benefits and other support in addition to, or instead of, being gainfully employed.

At present, few countries keep complete data for the number of people with congenital heart defects who are participating in working life, although there are some exceptions: studies from the Netherlands, Germany, the UK, Finland, and the USA suggests that 57-77% of all adults with moderate or complicated congenital heart defects are working. Adults with complicated congenital heart defects continue to work to a lesser degree than those with simple defects. However, the treatment for such children has improved greatly in recent decades, so that an increasing number of children with complicated diagnoses are growing up, becoming adults, and entering the working world.


The financial consequences of being unemployed differ between countries. Unemployment does have other negative effects, such as lowered self-esteem and reduced social contact, even in the most favourable welfare systems.
We know little about unemployment in adults with congenital heart defects. Some studies have shown that the situation for such people is about the same as for the rest of the population, irrespective of diagnosis or health status. However, in a 2005 study from England, the rate of unemployment for participants with heart defects was greater than for the population otherwise. This finding shows that adults with congenital heart defects can find getting work or keeping a job over time difficult. Adults who had been terminated from employment took a long time to find a new job, and many had been unemployed for more than a year. These figures could correlate with a lack of career counselling.

Part time versus full time

Not surprisingly, the few data that are available show that women with congenital heart defects are not as active in working life as men are. This finding is consistent with the figures for the population as a whole. However, both male and female adults with congenital heart defects work part-time more often than do those who are healthy.

Being occupationally active does not just mean working a full day every day. For example, in a Dutch study, having a job was defined as being gainfully employed for more than 12 hours a week.
Not everyone is healthy enough to work full-time. A balance has to be made between work and leisure time, and a person should feel in control of both. But it always pays to work, both financially and socially. Participating in working life also confers status, which is something that is probably more important than we like to admit. Research shows that people who work generally have a higher quality of life than others (see section on quality of life).

Many new questions

All studies investigating work and education for people with congenital heart defects have excluded those who have major learning disabilities or impaired mental development. How many people does this group consist of?

We have to assume that when people with congenital heart defects choose not to work, they do so because of their heart defects. But what if such choices are attributable to other factors, and what might those factors be?

We do not have enough knowledge about adults with congenital heart defects who do choose to work. What promotion opportunities are available for them, and what are their prospects in terms of securing a good pension?

A new generation of children with even more serious heart defects, such as hypoplastic left heart syndrome, is now on the path to adulthood. How will they be able to contribute to the working world? What problems will they encounter, and how will we deal with them?

There is much that we do not yet know enough about in terms of the education and the working lives of adults with congenital heart defects, partly because this population is fairly new and just as differentiated as any other, and partly because of a lack of research. It will be exciting to follow the developments!


Crossland DS, Jackson SP, Lyall R, Burn J, O’Sullivan J. Employment and advice regarding careers for adults with congenital heart disease. Cardiol Young 2005; 15: 391–95.

Deanfield J (chairman) and all Task Force Members. Guidelines. Management of grown gp congenital heart disease. The Task Force on the Management of Grown Up Congenital Heart Disease of the European Society of Cardiology. Eur Heart J 2003; 24: 1035–84.

Nieminen H, Sairanen H, Tikanoja T, Et al
Long-term results of pediatric cardiac surgery in Finland: education, employment, marital status, and parenthood. Pediatrics 2003; 112: 1345–50.

Kamphuis M, Vogels T, Ottenkamp J, van der Vall EE, Verloove-Vanhorick SP, Vliegen HW. Employment in adults with congenital heart disease. Arch Pediatr Adolesc Med 2002; 156: 1143–48.

Self-educational meeting for patients with tetralogy of fallot. Oct 9–10, 2008. Rikshospitalet, Norway.

Social data from the the National Registry for Congenital Heart Defects in Germany.

The Swedish Registry on Grown-Up Congenital Heart Disease: Annual Report 2007,, accessed on: 02/12/2008.

Young people with heart defects. A pamphlet from the Norwegian Association for Children with Congenital Heart Defects (FFHB).

Author(s): Marit Haugdahl
Reviewed by: Malin Berghammer
Last updated: 2010-04-16

Do you want to tell us about your experiences? Leave a comment on this article.

Comments on this article

26.06.2010 | silvana yamauchi, argentina
Tengo 31 años, y naci con una cardiopatia, a veces creo que tengo un miedo desdemedido respecto de mi futuro laboral, ahora trabajo como fotografa, pero no se por cuanto tiempo mas lo podre hacer, ya que a veces este trabajo requiere hacer muchos esfuerzos,
el miedo, en una persona que vive con una cardiopatia es, un factor clave, porque uno crece con miedo, con el propio y con el de los demas, creo que es un factor interesante a la hora de investigar sobre la gente que nace con una cardiopatia congenita.
Por ej. en el caso de la comunicacion, a mi no me ha sido para nada facil, poder hablar de mi corazon con mis padres, y creci con mucha desinformacion, y hoy en dia me sigue costando mucho vincularme, tanto con mi problema como con gente nueva sin sentirme "diferente", y con bastantes distorsiones sobre mi autoestima frente a algunas cuestiones de la vida.
21.09.2010 | jesus macias, españa
Hola yo tengo 30 años y nací con una anomalia en la válvula del corazón,voy una vez al año al cardiologo y hago una vida normal.Pero ahora he llegado en un momento de mi vida que me he propuesto opositar y todo lo que me encuentro son obstáculos para mí.Cuando hízé el servicio militar no tuvé ningún problema para pasar el reconocimiento y ahora que quiero trabajar en el estado no me dejan por mi valvulopatias,¡crees que eso es justo!
09.10.2010 | Janine Lamboy, Deutschland
Ich bin seit fast 5 Jahren Selbstständig, mache Akupunktur und Osteopathie für Tiere zudem studiere ich noch Humanmedizin. Habe einen angeborenen Herzfehler, der vor 3 Jahren operiert wurde. Aortenklappenstenose und Aneurisma der Aorta ascendence. Habe eine Prothese anstelle der Aorta bekommen und eine Aortenklappenrekonstruktion aus eigenem Gewebe! Man kann also meiner Meinung nach,natürlich auch je nach Herzfehlerschwere alles werden was man will, wenn man mit sich vernünftig umgeht!!!! Mir geht es sehr gut und habe keine Einschränkungen in beruflicher und auch sonstiger Hinsicht!!!!! Und mir ging es kurz vor der Op und etwas länger nach der Op nicht immer so gut!!! So eine Op verändert einen Menschen auch, aber nicht nur negativ sondern auch besonders positiv, wenn man an sich glaubt und für ein normales Leben kämpft, kann man ein wunderbares Leben führen!
26.10.2010 | Petra Rüthing, Bochum - NRW, Deutschland
Hallo liebe Leser,

ich bin Mutter eines 16 Jahre alten Sohnes mit angeborenem Herzfehler. Unser Sohn hat bereits 3 Operationen im Verlauf seines Lebens ertragen und lebt seit 5 Jahren mit einer künstlichen Aortenklappe. Verbunden damit ist die tägliche "nervende" aber notwendige Einnahme von Warfarin. Seit Geburt ist er schwerbehindert und nunmehr steht die Berufswahl vor der Tür.

Leider besteht bei der Polizei oder Bundeswehr (was ihn interessiert) nicht die Möglichkeit, als Schwerbehinderter ausgebildet zu werden (Beamtenlaufbahn).

Empfehlen können wir die Bundesfinanzverwaltung (Zoll), die sowohl im mittleren als auch im gehobenen Dienst Ausbildungsplätze für Schwerbehinderte anbietet. Es steht niergendwo geschrieben, aber telefonische Rückfragen bei der BFD West haben ergeben, dass Schwerbehinderte ohne einen Notendurchschnitt immer zum schriftlichen Einstellungsverfahren eingeladen werden und man dann entscheidet, ob der Kandidat mit seinen Einschränkungen später in einem der vielfältigen Berufsfelder eingesetzt werden kann. Das ist vorbildlich und wir hoffen, dass unser Sohn sein Berufsleben im kommenden Jahr dort beginnen wird.

Unter kann man sich bei Bedarf weiter informieren.

06.01.2012 | Tanja Richter, Deutschland
Ich bin 32 Jahre und arbeite seit Sommer 2011 in meinem Wunschberuf als Erzieher. Ich habe erst mit 17 von meinem Herzfehler erfahren und seitdem 2 Operationen hinter mich gebracht. Ich erhielt bei der ersten OP eine biologische Aortenklappe und meine Mitralklappe wurde "geflickt". Bei der zweiten OP wurden beide Klappen durch mechanische Klappen ersetzt. Einen Ausbildungsplatz trotz Abitur zu finden war sehr schwer. Entweder lag es an der Herzkrankheit, die ich bei Vorstellungsgesprächen nicht verschwieg oder an meinem damals 2jährigen Sohn. Ich habe dann Glück gehabt und meine erst Ausbildung als Augenoptiker absolviert. Meine damalige Chefin kannte sich mit dem Thema Herzfehler aus. Schwer war es dann hinterher eine Anstellung als Optiker zu finden. Also blieb nur die Arbeitslosigkeit. Durch einen 1€ Job im Kindergarten habe ich meine Zukunftspläne überdacht, mit den zuständigen Ärzten gesprochen und eine Ausbildung zur Erzieherin gemacht. Auch über vielen Umwegen habe ich es endlich geschafft im Berufsleben Fuß zu fassen. Wichtig ist dabei der Glaube an sich selbst und eine Familie, die immer hinter einem steht.
30.12.2012 | Luisa Cybulski, Deutschland
Hallo Leute,

ich bin 26 und mit einem univentrikulären Herz und einer Lungenhypertonie zur Welt gekommen, die mich in meiner Berufswahl sehr stark einschränkt, da ich körperlich nur gering belastbar bin. Da meine Neigungen eher im handwerklichen und kreativen Bereich liegen, habe ich damals nach meiner Schulzeit ein Berufsvorbereitungsjahr im hauswirtschaftlichen Bereich gemacht, da ich gerne in die Gastronomie gegangen wäre. Leider ist mir das durch die Schwere meines Herzfehlers nicht möglich. :( Also bin ich in den kaufmännischen Bereich gegangen. Schon die Ausbildung war nicht gut, da die praktischen Erfahrungen, die ich im Betrieb gemacht habe nur im hintergründigen Bereich lagen (Akten sortieren, Gutachten schreiben). Nach zwei Tagen, die ich an der Anmeldung verbracht habe wurde mir den Rest meiner Ausbildung diese Aufgabe nicht mehr übertragen. Dadurch hat sich bei mir Kommunikationsängste entwickelt (obwohl ich privat ein sehr fröhlicher und kommunikativer Mensch bin) und meine erste depressive Phase. Nun habe ich mich sechs Jahre in diesem Bereich, hauptsächlich wegen dem Druck von Außen (Arbeitsamt), ausprobiert und versucht, das nicht Erlernte noch aufzuholen, was mir bis heute nur geringfügig gelungen ist. Ich habe im Jahr 2011 eine Kur gemacht und danach bis jetzt noch ein knappes Jahr gearbeitet und so wenigstens meine Angst vor der Kommunikation fast überwunden, da ich viel positiven Zuspruch bekommen habe.

Trotz dessen möchte ich aus dem Bürobereich raus, da er einfach nicht mit meinem Wesen vereinbar ist und ich zudem auch dort körperliche Probleme habe. Ich habe eine Skoliose, die sich im letzten Jahr verschlimmert hat.

Nun habe ich über einen Freund Kontakt bekommen zu jemandem, der beruflich Menschen coached und Ihnen hilft sich besser zu präsentieren oder andere Möglichkeiten im Umgang mit verschiedensten Situationen aufzeigt. Er hat mir dazu geraten mein Abitur nachzuholen und zu studieren, da es mir neue Möglichkeiten verschafft. Ich habe mich auch schon öfter mit diesem Thema befasst und will diesen Schritt nun angehen.

Allerdings habe ich nun Probleme raus zu finden, wo ich Unterstützung finden kann (finanziell wie auch bildungstechnisch). Ich wohne in Berlin, daher dürfte es hier eigentlich viele Möglichkeiten geben. Ich kenne leider kaum jemanden mit Herzfehler (vor allem nicht in meinem Alter) und niemanden der mir in diesen Punkten weiterhelfen kann. Mein Freundes- und Bekanntenkreis besteht nur aus "normalen" Menschen. :D

Habt ihr vielleicht Tipps für mich oder Kontakte, an die ich mich wenden kann?

HERZliche Grüße