All you can offer is good advice

Asle Hirth (© Private)

“It is rare for young people or their parents to bring up the topics of education and career when they come to us. I don’t believe I’ve ever seen it happen. However, it is absolutely something they should be concerned about.”

So says cardiologist Asle Hirth, head of the Heart 13+ youth project at Haukeland University Hospital in Bergen, Norway.
 
“Maybe young people between 13 and 17 are generally too lethargic, or perhaps they don’t view it as a problem. I prefer to believe the latter; my impression is that young people are highly optimistic,” he adds.

Starting with what they cannot do

The Heart 13+ youth project began in 2005. Invitations are sent directly to the young people, not to their guardians. Extra time is set aside during the screening, and the young people are given a list of topics for discussion beforehand, which includes education and career. It is important to address these questions at around the ages of 15 to 16, when the first important decisions about schooling arise. The goal is to prevent the young person from steering determinedly in one direction, or perhaps even completing their education and applying for a job, and then realising that the occupation they have chosen is not possible for them. That happens on occasion, and generally comes as a shock to the individual in question.

“Initially we prefer to focus on what the young person can do,” says Asle. “But when it comes to occupation and education, it is easier to start out with what they cannot do. The list is actually a short one, so we can go through it quickly. Most occupations are open to anyone, although certain heart defects can limit the occupational choices somewhat.”

Asle emphasises that any guidance offered must be tailored to the individual. “We don’t give advice based on the diagnosis, but rather on the individual prognosis. It is good advice to avoid deciding on a specific occupation too soon, as one can quickly get locked in. It is better to decide the general direction you want to go in. That offers greater flexibility,” says Asle. He adds that he absolutely cannot make the choices for these young people. “We can only offer advice, and it is our duty to give good advice, regardless of the choices they make.”

Rhythm disturbances and the body

Heart rhythm disturbances that can cause fainting are top of the list of potential limiting factors. They are also the most common complication. “Those who have heart rhythm disturbances or are at major risk of developing them will automatically be disqualified from driving vehicles that carry many passengers. That’s why it’s a good idea to rule that out right from the start,” says Asle.

A health worker must have some idea of how strenuous various physical occupations are, as severely complex heart defects often entail reduced physical capacity and people with these conditions should avoid occupations that involve a lot of physical work. What constitutes too much must be determined on a case-by-case basis. Warehouse work may be too demanding for some, but a good fit for others. People with serious congenital heart defects should avoid outdoor labour, jobs in refrigerated warehouses and working near extreme heat as any existing impairment of physical capacity will be exacerbated by abnormally hot or cold conditions. Furthermore, physical fitness seldom improves over the years. “Physical work under normal conditions depends more on the type and degree of functional impairment. It has to be evaluated on an individual basis,” says Asle.

Education gives flexibility

Young people with congenital heart defects are generally like anyone else in terms of scholastic performance. “I occasionally get questions from guardians about writing applications for things like remedial instruction. As a rule, this is related to the complexity of the heart defect. It is generally those with single-chamber hearts who struggle somewhat more than the others,” says Asle.

It always pays to be good at school when it comes to choosing an educational or career path. “Good marks mean more opportunities and greater flexibility. You never know what the future will bring, or how the heart defect will evolve,” reminds Asle. 
If you do require a specially arranged job, the particular employer plays a major role. Some employers are smarter than others. “The smart employers set things up so that the individual can do a good job when he or she is at work, whether it’s three or five days a week. Education is an advantage in this regard as well.”

Warnings of trouble

Haukeland University Hospital monitors almost 400 adults with congenital heart defects, a growing number of whom are under 20 with diagnoses they would not have survived in previous generations. They mean a great deal to the hospitals, however Asle predicts that some of those with severely complex defects, like hypoplastic left heart syndrome, will have major handicaps when they reach adulthood. “The surgical procedures and care for children with heart defects have improved greatly. We will probably see more patients coping better than ever before. However, we will also see a new group of adult patients with severely complex defects, and they will experience a good deal of trouble and pose a challenge to the healthcare system. From that standpoint, the difference between those with severely complex heart defects and those with less complex defects may become greater than before,” says Asle.

Some examples

Girls are generally more sensible than boys, particularly during the teen years. “They think long-term in a completely different way,” concludes Asle. He notes one girl with a severely complex heart defect as an example. “She is fully committed to school, and makes all her own choices in that regard. She wants to be totally free to choose a course of study, and so she knows that she has to have good marks. She is not behind the others mentally, but she tires quickly and obviously must strive to keep up at school. She has also foregone other activities so that she has the energy to concentrate on school.”

Another patient was set on a football career and did not see his congenital heart defect as a limitation. “That may be fine until you are 17 or 18, but once you get to a certain level of competition you have to undergo a medical test, which he would not have passed. The truth was revealed by his ECG. When I told him this, his world fell apart. I blame myself for having providing that information too late. Naturally, we are quickly aware if anyone is extremely ambitious. Then it’s not such a good idea to speak up at once,” says Asle. One month after the boy had received the disappointing news, his mother rang the cardiologist and said the boy had now decided on a different career – another that would also place extreme demands on his body. 

“It is not uncommon for young people to make choices that ignore the advice they have been given. As a doctor, you can do nothing more than appeal to their good sense, and explain the consequences of their choices. In this case it finally helped! Today the boy is well on his way in training for a profession that he will handle just fine, and he appears to be quite pleased with his choice.”

Highly professionally active

Another patient with Marfan syndrome wanted very much to be a policeman. Asle felt that it was his duty to tell the patient that he would not meet the acceptance requirements. “But we don’t know the acceptance requirements for every course of study. That’s why we often ask the young people to search out such information themselves,” he says.

Some claim that careers in healthcare are popular among those with congenital heart defects. “Healthcare and social work are strongly represented among those who decide early on what they wish to do. Not too surprising perhaps, as the healthcare system is one area that this group has a relationship with. They don’t necessarily want to save the world, but they do see a nice place to work,” explains Asle.

Essentially, all of Asle’s adult patients are professionally active, assuming they have no mental handicaps. “I would say that more than 80% of them work full-time, although I don’t have exact statistics on that. Very few are on disability. I don’t find discrimination against those with heart disease to be a problem in the working world. This may be because we have strong protection for employees in Norway, compared with, say, Great Britain. There are major differences in a European context, making it important to have statistics for each individual country.”