I’ve got “cardiopatitis”!

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All parents I know, including me, who have children with heart disease suffer from, or at some time in our lives have suffered from, what I call acute “cardiopatitis”. “Cardiopatitis” is not a congenital illness; it is acquired the very moment that we hear of our child’s diagnosis of congenital heart disease.

“Cardiopatitis” has not been defined, nor is it featured in medical journals. But it can have devastating effects, not only for the person who is experiencing it, but also for those around him or her since it is a highly contagious illness. Because “cardiopatitis” is not recognised as an illness, people with it neither know that they have it, nor how to cope with it. These parents do not even dare to mention the symptoms. However, the symptoms are quite clear: distress, feelings of helplessness and guilt, pain and depression.

The most notable part of “cardiopatitis” is fear: a terrible dread of the uncertain future. One distinct characteristic of this illness is the intense wish to stop time, to rewind the film and rewrite the script. It is about escaping and denying a reality that we cannot confront. This escape does not always have to be about going back in time, it can also be an escape forward. In cases such as these, parents do not confront the illness. Instead, we believe that it is all just a bad dream, or hope that soon the miracle will happen when we are told that the painless, complete, and final cure for our child’s heart disorder has been discovered.

However, our child’s heart disease is an undeniable fact, as is our “cardiopatitis”. And just like our child’s heart illness, if our “cardiopatitis” is not treated in time, it can have consequences not only for the sufferer but also for the entire family. “Cardiopatitis” is, after all, highly contagious. But does a cure exist? Fortunately it does.

Acceptance of the illness

To be able to get better, the first thing we have to do is accept the situation as soon as possible. Acceptance does not mean resignation, it simply implies a positive attitude. We accept the situation in order to change and improve.

Therefore, we must accept three realities. First, that our child has a problem: that of heart disease. Second, that we have a problem: that of “cardiopatitis”. And third, that both our child and ourselves are going to need help.

The heart illness is our child’s problem. He or she is the one who is going to have to overcome it and learn to live with it. Our difficulty is not the congenital heart illness itself, it is how to overcome the fear that the illness brings out in us to help our child learn to live with their illness. We need to overcome our fears so that our children can grow up without fear. Although our child is not the problem, he or she does have a problem. Our child’s future depends on our acceptance of this fact.

To fully recognise that our child has a heart disease, we should first forget the idea or image of the perfect child that we created during pregnancy. We have to go through a period of mourning for the loss of this perfect child whom we expected to have. However, all children with heart disease deserve the right to be loved for who they are. If we do not accept them and love them as they are, we will never be able to get them to accept and love themselves.

Realising our limitations

We must boost our child’s self esteem. Any thoughts they might have that they are a burden to the family, and the consequent trauma that these ideas cause, must be stopped immediately. Conversely, the life experience and their struggle to overcome their problem will be a permanent stimulus in their lives that will greatly boost many of their abilities, which in turn will make us feel incredibly proud.

Our acceptance that we suffer from “cardiopatitis” implies realising our own limitations. We should avoid the pitfall of thinking we are super-parents, and by doing so prevent three dangers.

  • The danger of not admitting our weaknesses: Feelings of pain, doubt, and fear do not make us bad, weak, or useless parents. Instead they make us more human, and, if we accept these feelings they will help us to become more tolerant, understanding, and patient. We, our children and our family, are going to need these qualities.
  • The belief that no one can look after our children as well as we can.
  • If we let others replace us in the care of our children then we are failing them or letting them down as good parents.

There are times when it is better to acknowledge that situations get on top of us and wear us down. At such moments, we should seek the help that matches our family’s particular needs – ie from professionals to help us psychologically confront the new situation, from family and friends to avoid isolation, and financial assistance to help cope with new needs. Family members should discuss together what the individual needs of each member are. As parents we must look after ourselves so that we can really take care of our child. We have to accept that although our children are very important to us, we are also important to them and that if we are not well, then they will not be either.

The need to be informed

However, to accept the three realities mentioned above, we have to be fully informed. Information about everything to do with our child’s heart disease will greatly affect our ability to care for him or her. Seeking information is an obligation for parents. Not only is medical material essential, but also any other information about the social environment and about how the child will get on at school, within the family, with friends, etc. As parents we must also be fully informed, because we are responsible for transmitting this information not only to our children as they grow and need answers, but also to others in the social environment such as teachers, family, and friends. We need to learn to teach our child what is happening. And this process should not be limited to the first months or years of the child’s life. Just like the professionals who take on responsibility for caring for our child, we have to commit ourselves to a process of continuing education.

We must treat our child as a complete person, and avoid focusing excessively on his or her heart problem. We have to remember that there are many other physical, sociological, and psychological aspects that we cannot afford to ignore. The child with heart disease will grow up in the same environment as any other child. Interaction between our child and this environment will depend to a great extent on us, on how we bring him or her up, and on how we behave towards them and the people around us. We have to treat our children as normally as possible so that they are the first to feel normal, despite the fact that they are different in some ways. For our children's lives to be fully normal, parents must first understand and accept that being different is exactly what normal is.

Take control of our lives

We will have to accept our child’s limitations. However, we need to be fully informed about what the real limitations are so as to avoid risky situations and at the same time not put any more restrictions on his or her development than are absolutely necessary. Many less serious cases do not cause excessive limitations, and avoidance of extremes is recommended. Do not minimise the problem, deny or ignore it, but at the same time do not maximise it and turn it into an ongoing tragedy. We should, in any case, work with the idea in mind that throughout our child’s life we will go through different stages. Sometimes, and this period could coincide with times when our child is stable, we will tend to forget about the heart condition, whereas on other occasions when a check up or operation date is drawing near, tensions will rise and we might have relapses into acute “cardiopatitis”. This situation has been given the name of the “helter-skelter" effect. However, we cannot let this process take control of our lives; we have to be the ones who can anticipate it, and look for and find the help that we need to overcome it. 

Avoid overprotection

Only when we are the ones to take control of our lives can we prevent fear from dominating us and thus avoid one of the main risks that parents of children with heart disease face – overprotection. We should resist the temptation to put our child in a bubble, a safe but isolated place that protects him or her from the risks of daily life. We must seek security, but within a context of normality. Parents need to encourage self-sufficiency within the scope of their child’s real possibilities. We should not undervalue our children, marginalise them, or turn them into social invalids.

Mothers and fathers of children with heart disease need to believe and to create. We should believe that our children have the ability and the right to live a full life, and then we must create the conditions that make it possible for this life to materialise. The constant search for the difficult balance that all this involves will make both their lives and ours a wonderful challenge.

Good luck!

This article is written from the parent's perspective. To learn more about the parent’s reaction when they learn about the condition of their child from a psychologist’s point of view, read the interview with Elisabeth Utens.

Last updated: 2009-02-06

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Comments on this article

22.10.2009 | Sissy Carlin, Perú
I have a daugther, her name is Fatima Valentina, she is 8 months. When she was born she was diagnosed with Truncus Arterius I, also she is bilateral cleft lip and palate. I did know anything before she was born, it was really a big surprise... Imagine, I felt very anger with myself, I felt guilty, perhaps I did anything wrong... But, don't, I did'nt anything wrong, just something happened, somthing I wasn't prepare to. My chindren Joaquín (8) and Lucas (5) are healthy, I never, thanks God, have problems with them.
But, when was 28 days, she was operated, now her heart is very good. But it was a surgery of 8 hours, the most longer hours of my life, and she with just 4 pounds of weight, 17 inches, she was very little said the surgeons, but she hasn't more time, she could die.
She was 20 days in ICU, with the danger of infections and others things. When I saw her after the surgery I just want to cry, I just want to run from the hospital, my baby was full of tubes in her little and fragile body... I thougth I couldn't stand that pain... It was bigger than me... But she is a champion, a very strong girl, the doctors, my angels, take care of her all the time. She spent 2 months in the hospital, her brothers were very excited to know her, they didn't see before.
Now she is 8 month, is a beautiful girl, is growing very good, her heart is working great, life is different now. I full of hope, I know God exist and that He loves us. In a month she will be operated about her cleft lip.
21.03.2011 | Jaime Jenett, U.S.A.
I just wrote a blog post that touches on this:

It's so hard to figure out how to live in the moment and live with the reality that things could get very bad, very quickly, with little to no warning. Thanks for a great article.