These are the primary concerns in the days before and after surgery; only later do worries and concerns about life with the new mechanical heart valve kick in.
Children change – they grow, and develop, and are especially active. Consequently, the implications of the mechanical heart valve for quality of life is a central issue.
All parents wonder how long the replacement heart valve will last, and how often and when their child may again need surgery.
- What about if the child injures itself playing?
- How much at risk are younger children because of their tendency to acquire frequent minor injuries through playing and rough-and-tumble?
- How do you manage to prevent a child from injuring itself without being too restrictive or over-protective?
- How, when a child has injured itself, can you tell whether it is at serious risk?
These questions reflect the pressure of responsibility which parents experience, as well as the uncertainty as to what everyday life will bring.
In order to dispel these uncertainties, parents and their children will of course be informed and intensively counselled while still in hospital (according to their age and stage of development) about the risks associated with anticoagulant medication and how to live with it. The practice of inviting all parents, with their children if possible, to take part in an anticoagulation self-monitoring course has proved to be particularly beneficial.
Experience has shown that families feel more secure and gain confidence in being able to master the situation, that adjustment of medication becomes more precise, and that the frequency of medical check-ups decreases, which in turn raises the quality of life.
In older children and adolescents other questions come to the fore. Psychological developments which adolescents have to handle are finding their identity, detachment from parents, making contacts with peers, dealing with their sexuality, and choosing a career.
The question of the extent to which these developments become more difficult through the need to live with a mechanical heart valve depends, of course, on the overall situation and on the nature and severity of the heart condition.
Certainly, the permanent need to take medication instils greater discipline in the adolescent, and a willingness to co-operate with their doctors, than can normally be expected from their peers. Adolescents who have already learned as children to take on responsibility for their own lives and assess risks probably find it easier to integrate the necessary limitations on the way they lead their lives into this already turbulent and difficult phase of development. Independent INR self-monitoring makes a major contribution to ensuring that adolescents are more compliant in taking their medication and less likely to leave the responsibility with their parents and doctors.
Girls on oral anticoagulants must also face issues surrounding the possibilities and risks of becoming pregnant, giving rise to the need for special information and counselling.
In most cases a replacement heart valve means that the physical condition of the person affected will improve decisively. Recipients do not tire as easily, do not become breathless as quickly, and can take on more. Experience shows that families view the limitations and problems imposed by having a replacement heart valve as being manageable and not too restrictive on their quality of life.
To conclude, here is a quote from a 17-year-old patient after having received a new heart valve: “I was almost looking forward to this operation. I now hope that I can do more of what my friends are doing, and above all I am looking forward to some healthy exercise.”
Renate Kilborn, Psychologist, Heart- and Diabetes-Center NRW, Bad Oyenhausen (Germany) (2002)