Future health for children with congenital heart defects

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How to effectively ensure that a child with a heart condition will have the best future possible. A healthy diet and avoiding risky behavior are discussed.

Key points

  • Many children with congenital heart disease function normally and will have a long life-span.
  • Your cardiologist will tell you if your child might need future surgeries for their condition and will try to give you an idea of what you can expect for their long-term outlook.

This page answers frequently asked questions about the future health of children with heart conditions.

What can your child do to make their heart better?

The best thing they can do is to eat well, stay active, and engage in life. It's important to avoid risky behaviour, like risky physical activity, smoking, alcohol, or street drugs.

What symptoms might indicate a worsening condition?

Generally speaking, symptoms that might indicate that a heart condition is getting worse include:

  • dizziness
  • chest pain
  • swollen feet and legs
  • shortness of breath
  • increased fatigue
  • blue spells
  • sweating around the head
  • squatting
  • palpitations

The symptoms are very much the same as initial symptoms that indicated the presence of a heart condition.

What should you do if you are worried about symptoms?

Some children are expected to have symptoms, given their condition. Others may not be expected to have symptoms. The cardiologist will have given you an idea of what to expect over time.

If your child is young, the role of watching for symptoms will, of course, fall to you as the parent. Older children should be taught to be aware of their bodies and how they are feeling. Teach your child or teen to watch out for symptoms that might indicate a worsening condition. You child should be encouraged to take responsibility for their care as they grow and know when to alert you if they are feeling poorly.

If your child is experiencing symptoms, contact the cardiac clinic. The clinic nurse will tell you what to do and when and if your child should come in to see the cardiologist. In urgent cases, go to the emergency department.

Should your child have a MedicAlert bracelet?

To help safeguard your child's health, and for your own peace of mind, you might want to consider getting your child a MedicAlert bracelet. These are bracelets that children and adults wear all the time that identifies a serious medical condition. Paramedics and other health care professionals are trained to look for MedicAlert bracelets, read the information engraved on the back, call the 24-hour emergency hotline to access the person’s confidential medical record, and begin immediate treatment. Especially if your child is off at school, at camp, or on a trip, this helps ensure that should their heath be compromised in some way, anyone treating them will know about their condition and take that into account.

Will your child need more surgery later in life?

Depending on the type of heart condition your child has, they may need subsequent surgeries as they grow older. Things like artificial valves or tubing become too small for a growing child and need replacement, sometimes more than once. In some cases, the first surgery just loses its effectiveness over time or the condition of the heart grows worse and more treatment is needed. And in other cases, one surgery is simply the first step in the repair process, and additional surgeries may be needed when your child is older to complete the process.

How long will your child live?

This is an extremely difficult and complex question. The good news is that fewer children now die of congenital heart disease, thanks mainly to advances in diagnosis and treatment. In North America, the number of deaths due to congenital heart disease has dropped by more than one-third over the past two decades.

It is impossible to say for certain how long someone with a congenital heart disease will live. Some children live longer than others, due to a vast number of different variables. This can include anything from the basic medical condition and effectiveness of treatment, to their attitude toward life, how well they take care of themselves, and what family support they have. Some life expectancies may be roughly predictable, while others may not. The question is also complicated by the fact that complications and damage to the heart can occur, sometimes without warning.

The only person who can try to give you an answer is your child's cardiologist. They will be able to give you an idea based on the type of defect your child has, its severity, the treatment, and the outcome thus far. They will probably also provide information based on their own experience with other children with the same condition, as well as data drawn from clinical studies looking at larger groups of children with the same condition.

It's important to realize, however, that every individual is different. Data from studies paint a certain picture, but there are always people who overcome odds. So consider clinical data carefully, or not at all, if that is your choice. The key is to encourage and help your child to live as healthily as possible given their condition, get the necessary care throughout their lifetime, be hopeful, and live life to the fullest.

For more information, please see the page on Coping with Chronic Illness like Congenital Heart Defects.

How do people with congenital heart disease usually die?

Many children with congenital heart disease function normally and live normal lives, particularly if they have a low-risk condition. It is important to be aware, however, that every individual's experience is different. Some of those who reach middle age begin to lose some quality of life. Some patients have a gradual decline in their health. Some of these may be helped by re-operation. Other patients may suffer a sudden and relatively unexpected death. Your cardiologist can give you more information specific to your child’s condition, although even children with the same condition can all behave differently.

Last updated: January 15th 2010