For Families

Being the parent of a sick child can be stressful and difficult. You need to arm yourself with useful information to help you through what can be a frightening time.  Here is some of the key information you need to know to start with.

Heart Murmurs

The term "heart murmur" can lead to confusion and often unnecessary concern. Murmurs are common and related to many different things.

Remember:

    A murmur is simply a sound not a disease or abnormality.
    Normal hearts can produce normal sounds which may still be called murmurs.

Murmurs may also be produced by abnormalities of the heart but the murmur is not the issue. It is understanding the abnormality (and whether it is important to how the heart functions) that matters.

Heart Abnormalities

There are a wide range of heart abnormalities. Some are very minor and have little or no impact on a child's life, whilst others can be major. Abnormalities don't have to mean problems.  There are many types of abnormality, and variations within abnormalities, so it's always important to check with your cardiologist to understand the details specific to your child.

It is important not to compare your child's heart condition to others the child who has "just the same thing" probably doesn't quite have the same thing at all, and this can make a difference!

Two questions that may help you when you speak to your cardiologist are:

    Does this abnormality make much of a difference on a day-to-day basis or into the future?
    In what important ways could it make a difference?

Also, know that things change, especially in children. This is particularly true for newborn babies. Over the first few weeks of life, a baby's circulation changes in a number of ways. Understanding these changes is one way your cardiologist judges the significance or an abnormality and how best to manage it. Sometimes the best approach is to just watch progress to make things clear this is safe to do under proper supervision. Some abnormalities change and have less effect as time passes.The consequence is that:

    It can be hard to be sure how an abnormality will affect a baby if it is found in the first few weeks of age , so
    It is better to be guided by your cardiologist

Risk and Complications

We would often like to know how things will turn out in life, and when it comes to our children this becomes an overwhelming concern.  Everyone talks about risk but it is not possible to know the exact risk of success, failure or complication for any one person. Your cardiologist and cardiac surgeon are in the best position to advise you about this.  When thinking about risk, it is good to remember that many things we do every day carry risk but we take simple precautions to avoid these and then often don't think too much about it after that.  Complications of treatment are always possible but not necessarily dangerous.  It's really important to ask questions about the potential for critical or life changing events that might occur during your child's treatment.

Getting Information

It's natural to want to find out all you can about your child's condition.  There are many ways to get information family, friends, medical professionals, books, magazine articles, support groups, and of course web sites.  Be careful if you start gathering wrong or misleading information it can make your path to understanding things more difficult. Some information can differ between treating centres as well, and this can add to the confusion.

The best source for key information is your own cardiologist or cardiac surgeon. Once this is established other members of the Heart Centre for Children team can help out but getting a good idea of your child's particular heart abnormality is the first step.  You may find it helpful to:

    Understand how a normal heart and circulation works (to help understand the things that are not normal),
    Follow the links in this website,
    Try not to jump to conclusions.

The Team

The first point of contact in our programme is a paediatric cardiologist. This person is a physician who specialises in the diagnosis and surveillance of heart disease in children. Depending on the circumstances, and the needs of your child, others may need to be involved. This could be a cardiac nurse specialist, cardiac surgeon (the doctor who is called on when the solution to a problem involves opening the chest to operate on the heart), and a range of other specialist doctors, nurses and professionals working in our team. You can find this information in our Teams section.

The Big Picture

Try to keep an eye on the big picture. The details of treatment at any time are important but it is often better to see these as steps in a path to wellness. There are professionals who are part of the Heart Centre for Children who can help.  You may want to start with our Support for Families page.