Coping with a diagnosis of congenital heart defects

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Read about coping with a diagnosis. While the diagnosis may be upsetting, the good news is that a child's pain is no longer a mystery.

Key points

  • Don't spend energy bottling emotions up — it's healthy to express how you're feeling about your child's illness.
  • It is important to answer your children's questions about their conditions as honestly as you can so they are prepared for the treatment that’s to come.

This page explains how you can help your child cope after being diagnosed with a heart condition.

How do you cope with your child's diagnosis?

Give yourself time. It is very upsetting to hear that your child may have a serious condition. If there were few symptoms, it may have come as even more of a shock. If you find out your child has a problem shortly after birth, you may feel a combination of feelings – happiness at the birth of your child but anxiety over their health.

You may also feel as if you had something to do with the heart condition. But in very few cases could something have been done to prevent it. You may also feel angry or confused, and above all, you’ll be worried about your child’s future. All these feelings are normal, and you may experience them all at one time or another. And be prepared for other family members (siblings, grandparents) to be upset and confused also.

It's essential for your own health to give yourself permission to express your feelings. It's not a sign of weakness. Keeping your emotions bottled up may rob you of the energy and focus you need to deal with your child’s illness.

Why wasn't your child diagnosed earlier? Will the outcome be different?

Some conditions may not be evident in children until they are older, simply because the symptoms are not noticeable. "Catching" a condition earlier does not necessarily mean a child will do better. Sometimes surgery isn't possible until the child is older and stronger. In one study, for example, children with hypoplastic left heart syndrome and transposition of the great arteries who were diagnosed before birth were compared with those diagnosed after birth. The results showed that the earlier diagnosis hardly had any effect on risk of death before surgery or on outcome after surgery.

What's the good news?

While the diagnosis may be difficult to accept, the good news is that you now know what is causing problems for your child. Once the cardiologist has identified the condition, the problem can be addressed. This will provide some relief and a greater sense of what comes next. Knowing that your child is in the hands of knowledgeable doctors will be reassuring, and you and your child will be able to look forward to what treatment is expected to do for your child.

What do you tell your child about the diagnosis?

What you tell your child depends on how old she is. Obviously a baby won’t register information about her condition. Older children should, however, be aware of what's going on, in order for them to be prepared for the treatment that’s to come. Many parents are fearful of telling their children what’s wrong. However, knowing and being able to ask questions reduces a child’s anxiety level. It also makes them more trusting of the health care professionals who will be caring for them. Be honest but be as reassuring as possible. Your child will take their cue from you. If you are calm, hopefully they will be too. Reinforce that you will be with them throughout the whole process.

It’s not necessary to give lots of detail. For example, “Your heart needs to be fixed, and we'll be going to hospital soon to make it better." Give only the information that’s needed and allow your child to think it over and ask questions. Again, just answer the specific question asked. If the child does not want to discuss it, provide subtle prompting, by reminding them of the upcoming trip to the hospital, just as an opportunity to raise any issues they wish to voice. The same also applies if your child needs immediate treatment and won't have the opportunity to go home first.

How do children respond to illness?

Children up to about age 2 have trouble understanding illness, especially things they can't see or touch, like a heart condition. They worry more about being apart from their parents and are anxious about how things feel, like pain from tests or procedures. They often cry or try to avoid them in response. As they get older, they become more aware of what's going on around them and so should be told what's going on and why it will help. If something will hurt, they should know in advance. They should also know it's okay to cry. Being honest builds trust.

When they are older still (beyond toddler-hood), they are even more aware, and are inclined to think that they did something to cause the illness. They must be told otherwise. Coping strategies (e.g. relaxation techniques) are helpful at this stage. (Link to section on coping with pain). Beyond the age of about 7, children are more compliant when it comes to treatment and less likely to blame themselves for an illness. After about age 2, there is an ability to understand the illness and how it connects with the symptoms being experienced.

Answering your child's questions

Children are naturally curious and may have many questions about their illness and treatment. Your child knows and trusts you, and will expect you to answer most of her questions. Here are some ideas to help you answer some common questions that children ask. [This information was adapted from “Questions your child may ask” by the Canadian Cancer Society.]

Why me?

A child, like an adult, wonders why they got sick. The child may feel that it was something they did. It is important to tell a child that no one, not even the experts, knows what caused a particular heart condition. At the same time, they need to know that the experts do know that the condition did not occur because of anything they did or thought, and they did not “catch” it from someone else.

Will I get well?

Many children are afraid to ask if they will get well. They fear the answer will be “no”. Tell your child that they have a serious disease, but the medicine and/or operation will help to correct it. Your child can also be told that the doctors, nurses and family are trying their best to make them well. This gives the child an honest, hopeful answer. Your child may feel more secure knowing that many people are involved in their care.

What will happen to me?

When children are first diagnosed, many new and frightening things happen to them. While at the doctor's office, clinic or hospital, they may see other children who are not feeling well. A child may be too afraid to ask questions and may develop unrealistic fears. For this reason, your child should be told in advance about the treatment, possible side effects, and what will be done to help if they happen. They can also learn that there are many kinds of heart conditions and that what happens to one child may not happen to them. It also helps to know when the treatment will happen, how long they will need to stay in hospital, and how many hospital visits there are likely to be.

Why must I take medicines when I feel okay?

Most of us link taking medicine to feeling sick. It's confusing to a child to take medicines when they feel well. It must be explained that the medicine will help control or get rid of the problem caused by the heart condition to make them well.

What should I tell the kids at school?

Children with a heart condition may worry about how their friends and schoolmates will react. This is especially true when they have missed a lot of school or return with physical changes like weight gain or decreased energy. Encourage your child to keep in touch with close friends and classmates. Their friends may want to know what happens when they are away from school. Tell your child to talk honestly about their disease and the kind of treatment needed. Suggest that they reassure their friends that they cannot “catch” the condition from anyone else.

Reassure your child that you will help to create a supportive environment. You can do this by preparing and educating school staff before your child’s return to school.

You can help your child to understand that not all people (including some adults) know much about heart conditions. These people may act differently toward your child and offer information about the illness that is wrong. Such talks with others may cause your child to have doubts and fears, despite all your reassurance. If your child is willing to share, ask them about their conversations with others so that you can correct any mistakes.

Your child will learn two important lessons about how people react to illness:

Some people, no matter what they are told, may act differently than usual because they do not know much about heart conditions. They may also be afraid to learn more about the disease.

Good friends will remain their friends. They know your child is still the same person.

Will I be able to do the things I did before?

The answer to this question is different for each child and depends on the child's heart condition and treatment. Your child may feel very tired during treatment, which prevents him from doing activities. They may also need some restrictions at different times during treatment. When the doctors or nurses tell you to limit your child's activity, tell then why it is needed, and how long it will last. Some physical changes may be permanent and may change what your child can do. Help your child replace one kind of activity for another. For example, if your child should not engage in contact sports, suggest asking friends to come over to draw or paint.

Will the condition or treatment hurt your child?

Generally, your child won't feel pain from her condition. They may be tired or breathe more quickly than normal, but their heart won't "hurt."

Some drugs and medical treatments may be uncomfortable for your child. Unfortunately there may be some discomfort involved, but the doctors do their best to minimize any pain. For example, the anaesthesiologist will give your child drugs so that she will sleep and not feel the procedure. This health care professional will also give them drugs to reduce the pain from, for example, having a tube inserted during surgery or as an incision heals.

What will the outlook be for your child?

The outlook for your child depends on the type of heart defect, how severe it is, and the age of your child. With modern technology and treatment, the outlook for children today is positive; in many cases it is possible to correct the defect or at least improve the child’s condition.

What type of treatment your child needs, and when, also depends on many different factors. Some kids may need treatment right away, while others may be able to wait. Every child’s condition is different. Your child’s treatment team will be able to give you more information about the outlook for your child.

Last updated: December 14th 2009