Childhood heart disease has a profound impact and is under-recognised

October 19, 2017 by Nadine Kasparian, David Winlaw And Gary Sholler, The Conversation
Most people assume heart disease is a lifestyle illness that only affects adults. Credit: Kylie Kennedy

We are all aware of heart disease in men and women. But childhood heart disease, and its often profound impact on the health and wellbeing of children and their families, is almost invisible.

Every day in Australia, eight babies are born with , worldwide there are about 1.35 million babies with heart disease each year. Childhood heart disease is fundamentally different from heart disease diagnosed in adult life, which typically occurs as arteries become blocked and heart valves deteriorate with age.

Lifestyle factors often contribute to poor in adulthood, but most heart disease is unrelated to lifestyle. There are many different heart conditions that can occur in childhood, with the main distinction being those present from birth and those that develop during childhood.

Congenital heart disease

The most common type is , in which structural abnormalities of the heart are present at birth. This affects one in every 110 newborns and common examples include "holes" in the walls dividing the two sides of the heart, malformed or chambers, and distortion or obstruction of the main arteries leaving the heart.

Some children with congenital heart disease have minor abnormalities that never affect their health or need intervention. Others have more complex heart abnormalities that critically impact wellbeing or survival. Many complex forms of congenital heart disease are now identified before birth, when a baby's heart is just the size of a pea.

Babies and children with complex congenital heart disease require care by highly skilled heart health teams. Sometimes care involves a single but major procedure, usually an open heart operation, while others need a series of operations throughout infancy and childhood. There is a small but real risk of death (7%) and other important complications.

Congenital heart disease is the most common reason babies are admitted to paediatric intensive care. It's also a leading cause of infant death, and one of the leading causes of disease-related disability in children under the age of five.

For some children heart disease may be mild, while some require surgery. Credit: Kimberley Low

The cause of most congenital heart disease is still not known, but we're increasingly finding genes that play an important role. Medical advances have also resulted in marked improvements in survival, with many more adults now living with complex congenital heart disease.


Abnormalities of the heart beat (arrhythmias) can occur at any time in life. For some, these occur in childhood, resulting in abnormal and occasionally dangerous variations in heart rhythm.

For most children, medication and sometimes cardiac catheterisation (long "wires" inserted in an artery or vein and threaded through the blood vessels to the heart), can offer a "normal" quality of life.

There are rare types of arrhythmia conditions without simple cure and where, even in small babies, pacemakers may be needed to sustain normal heart rate or implantable cardiac defibrillators are used to deliver corrective shocks.


Cardiomyopathies are abnormalities of the itself, often occurring in families, and can lead to abnormal heart muscle thickening or weakness. Although the majority of these conditions affect adults, changes in the heart can begin in childhood.

Some conditions can lead to sudden death, with medical and psychological interventions key to providing the best possible protection and preservation of quality of life. In rare cases, a heart transplant in childhood will be needed.

Childhood heart disease has a profound impact on wellbeing. Credit: The Children’s Hospital at Westmead
Acquired heart disease

Heart disease may also develop (or be acquired) in childhood. Rheumatic heart disease can occur after selected bacterial (Streptococcal Group A) infections, and Kawasaki disease (caused by inflammation of the blood vessels throughout the body) may impact the circulation of blood in the heart. Muscle damage after certain viral illnesses can reduce the strength of the heart muscle or prevent the heart muscle from functioning properly (such as in myocarditis).

Despite a reducing disease burden worldwide, remains a major challenge in developing countries, and persists in disadvantaged populations in developed countries, where it could be prevented.

Where to from here?

As our understanding of the genetics of childhood heart disease advances, so too does our capacity for more accurate prediction of risk, more tailored and personalised treatments, and the potential for prevention, and improved survival and quality of life.

Research is also finding new strategies for best practice medical and psychological care, including interventions to "buffer" young children from the psychological consequences of serious medical illness early in life.

Heart disease is an important childhood illness and for those with more complex conditions, there are implications across all stages of life. Although much progress has been made, we need more research, better transition from paediatric to adult heart health care and greater emphasis on mental health care to minimise the lifelong impact of childhood disease.

Explore further: Some newborns don't get heart defect, hearing loss tests

Related Stories

Some newborns don't get heart defect, hearing loss tests

August 25, 2017
(HealthDay)—Some newborns in the United States still aren't getting screened for hearing loss or congenital heart disease, a new report shows.

Pregnant women with congenital heart disease may have low complication risks during delivery

November 18, 2014
Pregnant women with congenital heart disease had very low risks of arrhythmias (irregular heart beat) or other heart-related complications during labor and delivery, according to research presented at the American Heart Association's ...

Middle-aged congenital heart disease survivors may need special care

April 20, 2015
For the first time, the American Heart Association has issued recommendations for healthcare providers treating people older than 40 with congenital heart disease.

Women with high-risk congenital heart disease can have successful pregnancies

January 12, 2017
New recommendations from the American Heart Association provide guidance to women with complex congenital heart defects and their healthcare providers about managing successful pregnancies, childbirth and post-natal care.

Do I need a heart scan?

August 4, 2017
Dear Mayo Clinic: I'm a 57-year-old man, and my doctor recently recommended I have a CT scan of my heart to look for calcium in my arteries. I've never had heart problems. Is this test really necessary?

Increasing number of US adults living with congenital heart defects

July 5, 2016
More adults are living with congenital heart defects in the United States, creating the need for more health services and tracking systems to collect data across all ages, not just at birth, according to new research in the ...

Recommended for you

No sweat required: Team finds hypertension treatment that mimics effect of exercise

October 16, 2018
Couch potatoes rejoice—there might be a way to get the blood pressure lowering benefits of exercise in pill form.

New model suggests cuffless, non-invasive blood pressure monitoring possible using pulse waves

October 16, 2018
A large team of researchers from several institutions in China and the U.S. has developed a model that suggests it should be possible to create a cuffless, non-invasive blood pressure monitor based on measuring pulse waves. ...

Why heart contractions are weaker in those with hypertrophic cardiomyopathy

October 16, 2018
When a young athlete suddenly dies of a heart attack, chances are high that they suffer from familial hypertrophic cardiomyopathy (HCM). Itis the most common genetic heart disease in the US and affects an estimated 1 in 500 ...

Novel genetic study sheds new light on risk of heart attack

October 12, 2018
Loss of a protein that regulates mitochondrial function can greatly increase the risk of myocardial infarction (heart attack), Vanderbilt scientists reported Oct. 3 in the journal eLife.

Researchers say ritual for orthodox Jewish men may offer heart benefits

October 11, 2018
A pilot study led by researchers at the University of Cincinnati (UC) College of Medicine suggests Jewish men who practice wearing tefillin, which involves the tight wrapping of an arm with leather banding as part of daily ...

Markers of dairy fat consumption linked to lower risk of type two diabetes

October 10, 2018
Higher levels of biomarkers of dairy fat consumption are associated with a lower risk of developing type 2 diabetes, according to new research published today in PLOS Medicine. The study, in more than 60,000 adults, was undertaken ...


Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.