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Before the first appointment, a team member will contact the parent or carer. We will ask a few questions about your child and family to help the clinical team prepare for your child's care and assessment.

You will meet the health professionals involved in your child’s care at the first appointment. 

This may include paediatric cardiologists, clinical geneticists, trainee doctors, specialist nurses, psychologists, genetic counsellors, clinic coordinators and researchers. 

We will perform some tests at the appointment, such as an electrocardiogram (ECG) and/or echocardiogram (‘echoâ€�). These are non-invasive tests, meaning they are done outside the body. 

Following this, you will meet with the heart doctor (paediatric cardiologist), who will assess and discuss the next steps for your child's care. 

Sometimes, additional testing is required, either on the same day or later. We will explain why any extra tests are needed at the appointment.  

Please bring any information about your child’s and family medical history with you if you have not provided it to the team prior to the day.

We use various tests to help us diagnose and care for children and young people referred to our service for review. The type of testing depends on the condition being suspected or diagnosed.

Electrocardiogram (ECG)

An ECG is a recording of the heart rhythm. It involves placing stickers on your child’s chest and limbs to allow the electrical activity in the heart to be recorded. The test takes about 5 to 10 minutes. 

• Read the Electrocardiogram factsheet

Echocardiogram (‘Echo�)

An echocardiogram is an ultrasound of the heart that allows the cardiologist to see the heart’s size, structure, function, and blood flow through the heart. This test takes about 30 to 40 minutes. 

• Read the Echocardiogram factsheet

Holter Monitor 

A Holter monitor is a small mobile ECG recorder that provides heart rate and rhythm monitoring at home for a while, usually 24 hours. The monitor is attached to your child using small stickers (ECG dots) on the chest. 

This lets the team see your child’s heart rate and rhythm during daily activities. We will ask you to keep a log of your child's activities throughout the day so the team can match the heart rate and rhythm to their activity at various times of the day. 

After 24 hours, the monitor is removed and should be returned to the Heart Centre for Children at Westmead or Randwick, which may be via the express post satchel provided. 

• Read the Holter Monitor factsheet

Exercise stress test 

An exercise stress test assesses how the heart responds during periods of exercise. This test is suitable for older children. 

Your child must run on a treadmill or ride a bicycle while a continuous ECG is performed. Sometimes, a special facemask is worn. Their heart rate, rhythm, blood pressure, oxygen levels, and symptoms are monitored throughout the test, which is planned in advance.

• Read the Excercise stress test factsheet

Cardiac Magnetic Resonance imaging (cMRI) and Computer Tomography (CT) scan

A CT scan or MRI allows the cardiologist to see the structure of your child’s heart in detail. Depending on age and development, these tests may be performed while your child is awake or asleep. This test is planned in advance. 

• Read the MRI factsheet
• Read the CT scan factsheet

Blood tests

Sometimes, we will request a blood test. This can be arranged at the appointment or at another time that suits you and your child.

• Read the factsheet

As part of our clinic service, you may be offered an appointment with a genetic geneticist or genetic counsellor. 

During this appointment, the clinical geneticist or genetic counsellor may discuss the option of genetic testing to explore the cause of your child’s heart disease, or the inherited heart disease in your family. 

Genetic testing usually involves a blood test from your child and/or other family members. The clinical geneticist or genetic counsellor will also discuss the possible results of genetic testing and what these may mean for other family members. 

A genetic test may provide information about the likelihood of having another child with the same condition. Genetic testing is optional, and you can decline if you don't think it suits your child or family. 

If a genetics appointment is scheduled, a genetic counsellor will contact you before the appointment to ask about your and your family’s health history. 

As a service, we participate in research, to understand and improve the best care for children, young people and families affected by heritable or genetic heart conditions. 

If appropriate, we will offer you the chance to participate in relevant research if available. We will seek your (or, if appropriate, the young person’s) consent. 

Research approval is managed by hospital governance and ethics boards.

Like all other hospital services, information about your child's health, test results, and treatments is routinely stored securely in our hospital-based paper and electronic medical records. 

Read how we collect, use and store your child's health information.

In addition, NSW Health has a database specially designed to store genetic data of families with genetic, suspected, or diagnosed inherited heart disease. The Inherited Cardiac Conditions team uses this database. 

At your appointment, we will give you a brochure with detailed information about collecting genetic information and how this information may be used to help a family member or relative and guide the health care of your child. 

We will discuss this with you before adding any information to the genetic information database.