The couple: relationship and communication

(© Ulrika Hallin)

The birth of a child normally is a joyous time that brings a couple closer together, but for parents of an infant diagnosed with congenital heart disease, the news can be a real bombshell for their relationship as a couple.

While there is no definitive current research to prove that divorce or separation rates are higher among parents of children with congenital heart disease, compared with parents of healthy children, it is clear to see how such a diagnosis can shake the foundations of even the strongest relationship. If you want to preserve the relationship, it is essential to keep the communication open and active.

Assimilating the news

When parents receive the news that their child has a congenital heart defect, they have to deal with it at different levels: as individuals, as a couple and as a family.

The mother and father must each process the news at an emotional level until they can accept it. At the same time, each should not forget that their partner has received a similar emotional blow, and their way of processing the shock may be very different.

During the assimilation period, one parent may demand emotional support from the other without realising that he or she is not ready, or able, to provide it. Each person has a different processing speed and capacity, and their rates of assimilation might not correlate for some time.

The speed at which the news is processed and accepted will depend as much on the person’s internal make-up as on external factors. There are many external elements, including the moment of diagnosis (during pregnancy, or birth of the child), the child’s age at the time of diagnosis, whether the child requires surgery, future treatment plans and expectations of recovery, to name a few. Just as varied are the parents’ individual characteristics, such as age, education, religion and personality, all of which play a part in his or her response to the news.

For all these reasons, it is hard to predict how parents will react when they are told their child has congenital heart disease.

What the experts say

Studies carried out in the late 1970s and early 1980s indicate that rates of divorce and legal separation among parents of children with congenital heart disease do not significantly differ from those of couples with healthy children. Some more recent results indicate that levels of marital dissatisfaction are higher among parents of children with heart disease, and that mothers of children with heart disease are more at risk of marital breakdown than mothers of healthy children. However, nobody knows whether the risks result in higher rates of legal separation and divorce or not.

What has been clearly shown is that parents of children with congenital heart disease go through stages that endanger the stability of their marriage. Why? Generally because communication between family members is weakened – to a point where it can end up disappearing altogether. Understanding the process and its risks may help to minimise the consequences.

Identifying the enemy

To begin with, it is important to understand that it is not only the coping process but also the news of the diagnosis itself that can form barriers against effective communication between partners: These barriers include:

  • Physical tiredness
  • Emotional tiredness caused by stress, anxiety, grief and mental blockage
  • Lack of time for oneself
  • Inability to reflect
  • Feelings of impotence
  • The fear that showing personal weakness or stress can make the other person go to pieces
  • Fear that another person's pain will bring you further down
  • Fear of hurting the partner
  • Feelings of utter disorientation and lack of control of the situation

However, the couple should understand that communication is essential if they want to stay together.

Excuse me, but who are you?

At the beginning, the painful impact of the news may be the main reason for silence, but there are other reasons too that are more difficult to explain, and to accept.
The experience of having a child with congenital heart disease may give rise to feelings in a person that he or she has never felt before, and their reaction to these feelings may be completely unexpected, even for the individual concerned. Their partner may, in turn, feel confronted by someone they have never seen before – someone who appears to be a stranger.

In fact, the affected individual may become a stranger even to themselves, and discover reactions, needs or wants that he or she has never experienced before. These reactions may not only be inhibitory, but also ways of coping. Previously unknown reserves of bravery and strength can also be discovered, as well as almost uncontrollable panic. If the feelings are altruistic and positive, then the fact that they are new will not stop them from being relatively easy to understand and emotionally manageable. The difficulties arise when the person’s feelings are not seen as socially acceptable by either them or the people around them.

Feeling guilty

Just when the child needs them most, a parent may want to run away, to get as far away from it all as possible. They may wish that it had all never happened. They might even go as far as to wish the child had never been born. Awareness of this desire might make the person feel guilty, or that they are a bad parent and not equal to the task. They might also feel ashamed, disappointed or powerless. At moments like this they might want to turn to their partner for understanding or help, but if their partner is experiencing exactly the same feelings, it might be difficult to find. If the partner’s way of coping is radically different (for example, if they have heightened feelings of wanting to be with the child, to protect it, to “make sacrifices” for it), then the situation is further complicated and one may feel worse, or guilty. Putting the blame on you might be something the partner does, but it is also something you can easily do to yourself.

Accepting the situation

Reactions are many and varied and no one truly knows how they will respond until the situation arises. However, any reaction is normal when confronted with a situation that has such a powerful emotional impact. There are no good or bad, positive or negative reactions. No one should feel ashamed or inferior because of how they feel; it is just a question of making an honest effort to detect any reactions that might be dangerous, both for the individual concerned, the couple and the family, with a view to tackling them and gradually eradicating them.

Each to his own

The new circumstances often require changes in family life, as new needs lead to a redistribution of the roles within the family. Each member of the couple is often forced to act in greater accordance with gender expectations.

  • The carer (normally the mother) has to spend more time with the sick child. This sometimes means that the mother may have to give up her job.
  • The provider (normally the father) is forced to spend more time at work, especially when costs have increased and income has gone down as a result of one of the family having to give up work.

This need for “specialisation” increases the distance (even physically) between the couple and makes communication more difficult.

Choosing the right weapons

In order to cope with all of these stress-inducing factors (as well as potential others, like caring for other children or travelling to hospital), the couple must harness the right methods for boosting communication and understanding. These are:

  • Finding the right moment to talk – not at the end of the day, when both partners are physically and/or emotionally tired.
  • Trying to control the situation. Avoid being carried away by events or feelings
  • Being honest
  • Listening without prejudging
  • Showing empathy. Putting yourself in the other person’s place
  • Thinking before speaking
  • Opening up
  • Asking
  • Respecting
  • Giving your partner space
  • Trusting in yourself and in your partner
  • Being patient: with yourself, with your partner and with the situation
  • Persevering


In times of great pain, it helps to feel that you are not alone. There are moments when you feel so down that it seems impossible to help someone else. But it is always possible to give love, understanding and respect. You must also accept that your partner needs moments of solitude and a life of their own.

It is essential not to make comparisons or set up competitions between yourselves as to who suffers more, who makes more effort, who loves their child more or who is the best parent, etc.
You must remember that everyone has their own identity, personality and needs and that these must be respected. Everyone has their own speed at which they adapt and get over things. This is a reality all family members must accept. The challenge lies in adjusting everyone’s speeds so that no one feels marginalised. Diversity is enriching and everyone should look for a place in the new family structure where they can feel most useful so as to achieve wellbeing for all.

Honest communication is the best way to avoid shutting off, distancing and misunderstanding. Both members of a couple should make an effort, take a step back and reflect on what it is that might be making communication difficult, and how they can change it. Communication must become a priority for guaranteeing the emotional health of all the family.


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Reviewed by: Araceli Galindo
Last updated: 2009-04-24

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Comments on this article

09.04.2010 | stephanie wilmer, deutschland
mein sohn hat auch einen herzfehler von geburt an! er musste operiert werden sonst wäre es zu spät gewesen! und ja ich gebe mir die schuld daran. mein partner musste zur bundeswehr obwohl der kleine noch im krankenhaus liegt! das ist gerade eine sehr schwere zeit für uns alle ich wollte erstmal einfach nur weg als der arzt kam und uns von dem herzfehler erzählt hat für mich ist eine welt zusammen gebrochen! mein partner und ich mussten jeweils alleine damit klar kommen wir haben nicht geredet und liebe leute ich sage euch das ist der grösste fehler dadurch ist fast unsere beziehung kaputt gegagen, aber ich bin so froh das er mitte der nächsten woche entlassenc wird wenn alles gut bleibt