Congenital heart disease, also known as congenital heart defect is a heart complication present at birth.

According to Deputy Head of Paediatric and Congenital Heart Centre at the National Heart Institute (IJN) Dr Leong Ming Chern, the condition is the commonest disease among children and it affects one per cent of their population globally.

It ranges from mild, simple conditions that don’t cause symptoms to complex illnesses that may lead to severe life-threatening issues.

Dr Leong said congenital heart disease is a spectrum with dominantly milder conditions than the serious ones.

Fortunately, he added that most cases can be treated and cured.

“But for a small percentage of children with complex heart disease, we still can do procedures and improve their quality of life,” he said.

Dr Leong also said that some children with mild conditions can even resolve spontaneously as they grow older.

However, he advised that those with symptoms to seek medical attention to avoid any risks.

The dreading “blue”

When babies are born, they should exude a natural pink colour to indicate their body has enough oxygen.

But if their colour is bluish at birth, Dr Leong said that may be the alarming sign that the infant’s body doesn’t have enough oxygen.

“There are two types of ‘blue babies’ – one can gain back near to 100 per cent oxygen concertation with treatment, and the other may not even reach up to 90 per cent despite surgery and other interventions.

“The second group are often diagnosed with complex complications such as having one pumping chambers or one main blood vessels instead of two.”

Dr Leong also pointed out that there are numerous types of heart defects and not all children necessarily present the symptoms at birth.

“Children with severe heart disease tend to show symptoms much earlier but another group of them with critical heart disease usually fall ill within the first month of life.”

Dr Leong stressed that early detection is the key to the child’s survival rate and longevity.

“Preferably, we want to catch the disease before the child is being discharged from the postnatal ward.”

He added that about 85 to 90 per cent of the children with heart defects are detected before six months of age.

“But the milder ones may be diagnosed at the later stage after they experience complications.”

Symptoms

According to Dr Leong, with today’s technology, congenital heart disease can often be detected during a pregnancy ultrasound.

“If doctors hear abnormal heart rhythm, they may further investigate the issue through follow up tests and screenings.”

However, he added that in some cases, the symptoms may not be so apparent until birth or shortly after that.

He noted that it’s imperative for the parents to equip themselves with basic knowledge on how to detect if the child is showing some symptoms of heart complications.

“The colour of the child is very important.”

“The child must be as pink as possible; and if the child has a darker colour, try to look at the tongue to see if it’s as pink as ours.”

He added that another common sign of congenital heart disease is breathlessness especially during breast-feeding.

“They also tend to sweat excessively when they are being fed.”

“It takes a lot of effort for them to be fed, just like they are running in a marathon.”

Dr Leong also noted that children with heart disease are more prone to becoming sick, getting chest infection and pneumonia.

Diagnosis

The diagnosis of congenital heart defects involves a series of steps – from the very basic to most sophisticated tests.

Dr Leong said in Malaysia the commonest method would be through oxygenation test to examine the child’s oxygen levels.

“If they don’t have enough oxygen, we observe for six to 24 hours before the child is tested again to see if the oxygen content is improved.”

If not, Dr Leong said the child would have to undergo further tests such as electrocardiogram, X-ray, echocardiography, magnetic resonance imaging and CT scan.

What causes congenital heart disease?

According to Dr Leong, the cardiac condition occurs as a result of an early developmental defects in the formation of the heat’s structure when the infant is still in the mother’s womb.

“The actual cause of the defect is still unknown, but we know that some medications, some diseases like uncontrolled diabetes and genetic disorder may cause abnormal formation of the heart,” he said.

To narrow it down, Dr Leong said Asians tend to have more of right-side heart disease, while the people of white ethnicity seem to have more of left-side heart defects.

He also pointed out that in most cases, the doctors don’t see a genetic trend when it comes to congenital heart disease. Generally, 1% of each baby is born have congenital heart disease. It occurs by chance in most cases.

“We often see that the parents are completely healthy but the child is born with a heart disease.”

Treatments

The treatment for a congenital heart defect depends on the type and severity of the defect.

According to Dr Leong, there are three types of medical treatments to help to give the child a new lease of life.

For the mild cases, he said they can offer non-invasive treatment via medication to help the heart work more efficiently.

But for the ones with slightly severe conditions, Dr Leong said they will conduct key-hole surgery to fix the hole, open up tight blood vessels or plug off any abnormal blood vessels without the need for major operations.

“Those with a more severe and complex heart condition will have to go through a more invasive procedure to fix the defects,” he said.

Dr Leong also highlighted that with the technological advancement in the medical science, the success rate of heart surgery has improved tremendously over the years, while the death rate continues to decline year by year.

“The bright side is that when the children are treated well they survive up to adulthood and can get a job and build a family.”

“They can even enjoy whatever sports activities they like, attend university, pursue any occupation they like and have a normal life,” he added.

He also noted that those patients who undergo surgery may resume normal activities after six weeks but they should avoid heavy sports that stress the heart until they are more firm.

“We also put them on a healthy lifestyle and observe their food to help the heart remain healthy,” he added.

IJN set up the Paediatric and Congenital Heart Centre in 2012 as a one-stop centre to treat children with all sorts of heart defects.

The centre, which is equipped with advanced facilities and infrastructure provides comprehensive care for babies, children and adolescents with heart disease as well as adults with congenital heart defects.

The centre also receives many of supports and contributions – in terms of equipment children’s books and toys – from corporations, associations and the general public.