Congenital Heart Disease Awareness Week: Helping with heart defects one beat at a time

HEART Kids SA, a non-profit organisation, was founded in 2014 by friends and families of babies who have been born with congenital heart defects (CHD).

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Speaking to Northglen News about how the organisation came into existence, director Charlotte Lombard said friends of hers had a grandson who was born with a heart defect.

“At the time, we did not know anything about it and thought that it was a rare case until my grandson was born with a CHD in 2014. My daughter lost her son after what had been a courageous 27-day fight for his life. During those 27 days, her research into congenital heart defects and getting in touch with international CHD organisations, brought about the realisation that his life trajectory may well have taken a different course had he been born in a first-world country with greater awareness and treatment of CHD,” she said.

Heart Kids SA then came about to both honour a life cut far too short and to advocate for the one in 100 babies who are born with CHD.

“We try and educate parents about CHD. The better equipped parents are, the more informed decisions they can make. It’s a long journey, and sometimes, it can seem like a lonely journey. There are financial constraints as the child is often hospitalised for weeks and sometimes months at a time. This would involve costs for the mother to either make the trip there and back from the hospital or stay with the child at the hospital. Some of our hospitals do have facilities for mothers to stay. The operations are not performed in every province, and often, this takes the mother away from home for long periods of time, and this is difficult when there are other kids at home,” she added.

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She said the organisation’s main concern is that government is not doing enough for these children. Lombard feels that the state should come on board in terms of budget and resources.

“Recently, we had a case where a mother had been away from her home for about six months, had travelled across two provinces and was taken up at four different hospitals before her baby could get the medical care she needed. There are not enough surgeons to perform these operations. Imagine your child having a life-threatening condition, but they have to go on a waiting list to get the medical care they need and deserve. We feel that, at birth, every child should be screened to avoid the panic when the parents discover after they are discharged that their baby is battling with some health issues,” she added.

Her advice to parents who have children with CHD is to talk about it and ask questions as this is the only way they will know what to expect.

“Equip yourself as much as possible. Don’t miss health appointments. Never be without your child’s medication. This is a long road, but remember that you are not alone. Remain positive as difficult as it is,” she said.

Lombard added that more funding and volunteers are needed in every province – volunteers who can walk alongside these families and mentor the families until they are emotionally strong enough to handle the journey.

To get involved or volunteer, visit www.heartkids.co.za or email info@heartkids.co.za. You can also call 071 149 3570.

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Signs and symptoms of congenital heart disease (CHD) in infants
H – Heart rate: Too low or high. Normal is 100 to 160 BPM
E – Energy: Falling asleep during feeding and/or poor weight gain and failure to thrive.
A – Appearance: Pale, blue or dusky skin.
R – Respiration: Breathing too fast or too slow. Normal is 40–60 breaths per minute.
T – Temperature: Cold to the touch, especially hands and/or feet. Excessive or abnormal sweating can indicate a CHD.

Signs and symptoms of CHD in children
H – Heart rate: Too low or high. Normal is 100 to 160 BPM
E – Energy: Sleepy, tires easily and cannot keep up with peers during physical exercise.
A – Appearance: Pale, blue or dusky skin, especially during active play or sports. Slow growth, poor weight gain and poor appetite.
R – Respiration: Breathing too fast or too slow. Complains of chest/heart pounding. Frequent colds or respiratory illness. Out of breath during play.
T – Temperature: Cold to the touch, especially hands and/or feet. Excessive or abnormal sweating.

Source: Heart Kids SA

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