Why is Raising CHD Awareness Important?
- Maboneng Heart and Lung Institute
- Feb 8, 2021
- 3 min read
More than 50% of parents that welcome a baby into the world have never heard of a Congenital Heart Defect (CHD). Which is a scary thought when we consider that CHDs are the most common birth defects in the world and are responsible for more deaths amongst children than any other illness or malformation.
Early diagnosis and appropriate intervention is perhaps the most important factor to consider when it comes to raising awareness of CHDs among the general public and healthcare professionals. The earlier the diagnosis and intervention, the higher the chances of a successful long term outcome and quality of life are for the baby affected. In cases where the present CHD is critical in nature, surgical intervention is usually required within the first year of life to give the patient any chance at life. Failure to intervene will unfortunately lead to death.
The lack of awareness not only leaves the general public in the dark - the healthcare system has also been impacted by the shortage of specialists equipped to treat and diagnose CHDs. Beyond that, there is also a lack of awareness about the facilities that are available to families that are overwhelmed by the news. Ultimately, increased awareness amongst the general population and healthcare providers means more chances of early referrals, diagnosis and proper management which improves chances of survival and the quality of life made available to the CHD warrior.
Symptoms and signs to be aware of during infancy, which may indicate the presence of a possible CHD: - tires easily during feeding - sweats easily around the head, especially during feeding - fast breathing while at rest or sleeping - poor weight gain - sleeps more than normal with a lack of energy to play - puffy face, hands and feet - irritability (non-consolable)
Improving awareness of CHDs additionally offers expectant parents, who will be affected by their baby’s CHD, with access to information that educates and equips them with knowledge that enhances their capacity to cope with the news and journey better. Oftentimes, parents are in complete emotional shock and denial when discovering their newborn baby has a heart defect. Almost all parents describe the event as overwhelming if not traumatic. Due to the fact that CHDs are seldom spoken about, it may also present as difficult for the affected family to make contact with families and individuals who have been in the same or similar situations. Enhanced awareness is likely to make finding a community who understands and has walked that same path more accessible - allowing the family to feel like they are not alone through their journey, which can feel incredibly difficult and challenging. Making connections with a community of CHD families means that their stories of success also serve as a source of hope and strength, and stories of loss offer a connection that only one who has grieved their baby knows. Both connection and the sense of community have immense positive effects on a person’s mental health and overall well-being, and offers a sense of purpose to everyday life to parents who may feel completely lost and confused. And lastly - to ensure continued improvements in diagnosis, treatment and recovery - increased awareness means increased funding for the vital research into the cause(s) and treatment(s) of CHDs. CHDs do not mean your baby is broken - they can be bandaged. Whichever factor resonates most profoundly with you, we thank you for your contribution to raising hope by helping us raise awareness.
Throughout CHD Awareness Week, we are raising funds for our foundation - The Maboneng Foundation. If you would like to donated towards life-saving surgeries for South African children suffering from Congenital Heart Defects, please click here. We thank you in advance for your generosity and care. The Maboneng Team
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