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Congenital Heart Disease explained

All parents want their children to be healthy and well, and to have long and productive lives. Heart disease is one of the biggest killers in South Africa, yet many of us aren’t aware that children can also suffer from heart disease. With Congenital Heart Disease (CHD) Awareness Week coming up from 7 to 14 February, there’s no better time to discover more about this important subject. We sat down with Paediatric Cardiologist and president of the Paediatric Cardiac Society of South Africa, Dr Liesl Zühlke, as she shares her expert knowledge about this condition that could affect our children.

The phrase is quite a mouthful - what is congenital heart disease?

“Congenital” means ‘existing at birth’. A child may be born with a defect, or abnormality, of the heart or blood vessels leading to or from the heart, known as congenital heart disease or CHD. It is the most common type of birth defect in the world and it can affect just under 1 in 100 children. However in South Africa we see less than this number as many cases go undiagnosed.  

Looking first at how the heart normally works, the heart has valves, blood vessels and chambers that carry the blood in a sort of a circle. When all chambers and valves work correctly, the blood is pumped through the heart, to the lungs to pick up oxygen, back to the heart and out to the body to carry oxygen to the muscles and organs, and once oxygen is delivered, back to the heart. When there are faults in the valves, chambers or blood vessels, this circle-like pattern can be damaged and the rest of the body may not get as much oxygen as it needs.

There are many different types of heart defects, ranging from very small lesions which can heal on their own, to much more complex and life-threatening abnormalities, such as critical CHD. The most common defects are termed “hole in the heart”, where there are defects in the walls between the chambers of the heart.

What are the important checks that should be done?

During pregnancy: A heart defect could be picked up at the 16 week scan and even more clearly at a 20 week scan. At these scans ask the sonographer to ensure that the heart has 4 chambers and that the flow into the lungs and body is normal. If not, your sonographer should refer you specialist for a detailed antenatal scan, and if needed, a paediatric cardiologist to determine the exact nature of the problem. Virtually all large hospitals in the country provide this service. If you have a history of CHD in your family or previous children, you should tell your doctor so they can check the baby’s heart very carefully on the scan.

After birth: It is important to ask if there are any problems with the baby’s heart before the baby leaves the health facility where they were born, and also when they go for their six week check-up at the clinic.

What are the signs and symptoms of CHD parents should look out for?

After birth, the baby’s heart needs to take over the job of pumping blood throughout the body and at this point, it may be clear that there is a problem.

  • First few hours/days of life: a baby/child that has critical CHD often has blueness of the skin, particularly with a blue tongue or lips. This is an important danger sign and should never be ignored. The baby may also have a fast heartbeat, fast breathing, and cold hands and feet.

  • Early infancy:  poor weight gain, pale or bluish skin colour (especially concerning is bluish tongue/lips), fast breathing when sleeping, at rest or feeding, and excessive sweating

  • Older children: tiredness, becoming short of breath easily and frequent chest and lung illnesses

You can use the HEART acronym as a way to remember symptoms to look out for.

Heart rate: Too low or high?

Energy: Sleepy? Falling asleep during feeding?

Appearance: Pale, blue or dusky skin?

Respiration: Breathing too fast or slow?

Temperature: Cold to touch? Especially hands and feet

If your child has two or more of these symptoms, please speak to your nursing sister or GP to refer you to a paediatrician who will do an initial assessment. If needed, they will then refer you to a paediatric cardiologist for further testing.

What causes CHD and what can be done to prevent it?

For most cases there is no known cause for the defect. In some cases there may be genetic reasons, and heart defects could also be caused by something the mother was exposed to in her pregnancy, such as an infection or a drug. For example, being exposed to German measles while pregnant could put the baby at risk for CHD, yet this can be prevented by ensuring that young girls are vaccinated against rubella. But for the most part CHD cannot be prevented. This means that early diagnosis is extremely important.

Can CHD be treated and do these children survive?

Some defects are simple and don’t need treatment, such as a small hole between heart chambers that closes on its own. More complex cases require surgery. With advances in surgery, virtually every heart condition can be improved, some entirely, by surgery. The good news is that most children born today with CHD will survive and, with proper treatment, can lead a normal or near-normal life, with many surviving into their late adulthood.

What is critical, though, is early detection, awareness and treatment. The earlier CHD is detected and treated the more likely it is that the child will survive and have fewer complications when they are older.

It must be an extremely stressful time for parents of children with CHD. What resources and support would you recommend for these families?

The Paediatric Cardiac Society of South Africa (www.pcssa.org) is a professional group of paediatric cardiologists and cardiac surgeons who’s aim is to improve the quality of care for children with congenital and acquired heart disease. Parents can ask questions on the website or email us (kidsheartSA@gmail.com), and an information portal (www.africa.congenital.org) allows parents to browse the condition of their child, read about the procedures and tests involved and download pamphlets. There are also several parent advocacy groups listed on the website. The organisation Heart Kids South Africa (www.heartkids.co.za) also provides support networks for families with children with CHD.

We celebrate Congenital Heart Disease Awareness Week as a time to raise awareness about this condition so that more children with CHD can be detected, diagnosed and treated as early as possible. Help spread the message by sharing this valuable information with family and friends and protect our little one’s hearts