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#CHILD: Managing congenital heart defects in children

CARDIOVASCULAR disease (CVD) is the world's leading cause of death, with an average toll of 18.6 million lives annually according to the World Heart Federation.

Although CVD is commonly associated with adulthood, the lesser-known fact is that children too are at risk of developing CVD.

The most common heart disease among children is known as congenital heart defects (CHD).

According to the Ministry of Health, the incidence of CHD among children is about 8 to 10 per 1,000 live births. With an average of 500,000 deliveries in Malaysia each year, the number of children born with CHD is about 5,000 a year, of which two-thirds will require surgical intervention.

Subang Jaya Medical Centre consultant paediatrician and paediatric cardiologist, Dr Choo Kok Kuan, says CHD results when the heart, or blood vessels near the heart, do not develop normally before birth.

Most congenital heart defects have no known cause. They may sometimes run in families while cases of CHD are associated with genetic disorders, such as Down syndrome, Turner syndrome and Williams syndrome.

"Some children are predisposed to congenital heart disease if the mother has diabetes or rubella, or has taken certain medications, such as anti-epileptic drugs, during pregnancy."

Sometimes a heart defect can be diagnosed before a baby is born. However, defects are usually identified days or even months after birth, when symptoms become obvious.

Less serious congenital heart defects may not be diagnosed until later in childhood because there may not be any noticeable signs and symptoms. It is also possible to have a heart defect and show no symptoms at all.

Doctors play a critical role in identifying any potential issues. If the newborn baby is not doing well and has a high index of suspicion for a serious congenital cardiac problem, early intervention is crucial.

Dr Choo says parents and caregivers of newborns and very young children should also be aware of CHD to improve on early detection and management of the disease.

Some of the most commons symptoms of CHD to watch out for include:

*Rapid breathing

*Bluish discoloration of the skin and mucous membranes which is commonly noticed around the lips, fingernails, palms of the hands and soles of the feet (cyanosis).

*Shortness of breath during feeding, leading to poor weight gain

*Poor growth

*Recurrent lung infection

As a result of medical advancements, the outlook for congenital heart diseases is increasingly positive. Children with CHD can survive and live into adulthood, depending on the type of birth defect.

However, parents are faced with challenges that come with caring for children with CHD who have unique and special needs.

"Heart medicines can be very strong and dangerous if not given correctly. Parents must understand how much medicine to give and how to give it. If the child takes a blood thinner, parents must have clear instructions on how to give this medicine safely."

Parents must also ensure the child eats well and receives adequate nutrition. These children often tire easily when eating, so they eat less and may not get enough calories.

Preventing infections is crucial. Although an infection in the heart or endocarditis is uncommon, children with heart defects have a greater risk of developing this. Good dental hygiene also goes a long way towards preventing endocarditis by reducing the risk of tooth or gum infection. Parents can get more information from the child's cardiologist about the latest guidelines on antimicrobial prophylaxis against infective endocarditis.

These children must also get all the recommended vaccinations.

Most children with a congenital heart defect can be physically active without restrictions. In fact, children are encouraged to be physically active to keep their hearts fit and to avoid obesity, unless they have certain specific heart conditions.

Emotional support will help too as such children may have self-esteem issues because of how they look. They may have scars from surgery, and they may be smaller, or have limits on how active they can be.

"As they transition to adulthood, parents can gradually teach them about their heart defect and guide them on how to care for their own health without being overly protective," says Dr Choo.

Despite the typical reaction to CHD, parents should be aware that some mild heart defects do not require any treatment. Although the more complex heart defects need medication, interventional procedures or surgery, many heart defects can be successfully managed, often in early infancy.

Most children with CHD reach adulthood. In fact, children with simple conditions may lead completely normal lives, while those with more complex conditions usually face more challenges that can nevertheless be surmounted with the right measures in place.

The goal is to prevent complications, reduce morbidity and mortality associated with heart defects, optimise and improve the quality of life of children with congenital heart disease.

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