Living with CHD

The outlook for congenital heart disease varies depending on the type and severity of the heart defect. However, in most cases, the outlook is reasonably good. Due to advances in heart surgery, 85% of children with congenital heart disease will survive into adulthood.

Exercise

Physical stamina will vary for each child with congenital heart disease. Children with heart defects that cause symptoms, such as shortness of breath, fast heart rate, or sweating, may have less energy and endurance.

The heart is made of muscle – so just like the muscles in other parts of our body it needs exercise to build it up and make it strong. Like body builders who pump iron to build up muscles you can build up your heart by making it work a little harder.

Many children and young people with congenital heart disease can play and participate in activities with friends, but may tire faster and will naturally stop when they are tried.

Some children can play sports and participate in physical education in school but cannot participate in competitive or contact sports. Consult your child’s cardiologist as to what type of activities are appropriate for your child.

If physical activity must be limited in a school-aged child asked your cardiologist or cardiac liaison nurse to write a letter to help teachers understand the activities your child can and cannot participate in.

Emotional

Many factors influence how a child feels about having congenital heart disease and how it affects him/ her mentally and emotionally, including the number of hospitalisations, the age of the child when diagnosed and body image.

Consultants, nurses, social workers, counsellors and other healthcare team members can provide guidance and recommendations for managing the many emotions that may accompany congenital heart disease.

Additionally, local support groups are made up of children with congenital heart disease and their families. It often helps to talk to others in your situation, and for your child to experience activities with others that may have similar medical issues as him/her. If you are interested in finding a local group near you please click here… (link to local groups page)

Dental Care

Good oral and dental hygiene is especially important for children and young people with a heart defect as dental disease, gum disease or badly decayed teeth can cause a disease of the heart called Infective Endocarditis. This is an infection of the inner lining of the heart caused by bacteria in the bloodstream.

Good dental hygiene can be followed by avoiding sugary foods and drinks between meals, not putting sweetened drinks in bottles for young children and asking for sugar free medicines. Also encourage your child to brush their teeth twice a day with fluoride toothpaste. Choose a small brush and use a small pea size amount of toothpaste for under 6 year olds.

The most important thing is to register your child with a dentist as soon as possible and inform the dentist that your child has a congenital heart defect. Your dentist will then be able to provide the best possible advice and treatment.