Deconstructing Congenital Heart Defects

In a country which has overtaken as the most populous country worldwide, it is of no wonder that we have a pretty high prevalence of congenital heart defects. With every 9 of 1000 births in our country suffering from a congenital heart defect (CHD), this amounts to over 200,000 in a year. I wonder how prepared are we?

Congenital Heart Defects impact 2000,000+ children in India every year.

The several scientific papers in well indexed journals have stated that the serious defects are likely to be present in about one-fifth of these infants. The gravity of situation mounts to have an intervention in first year of their life! By the first year even the senses are not developed completely, and these children already have major surgeries performed on them!

But the question we should ask ourselves are-why is this happening, can we do anything about it, is the society aware about this?  and in the end what we can do to bridge the gap between patient and the health care.? In addition to this, we also need to equip ourselves to deal with any unforeseen challenges.

Understanding Congenital Heart Defects

The first step towards managing a CHD would be to understand the various symptomatology associated with congenital heart diseases. It is of paramount importance for timely diagnosis and treatment. While symptoms may vary depending on the specific type and severity of the defect, common signs include cyanosis (bluish discoloration of the skin), rapid breathing, feeding difficulties, poor weight gain, and fatigue. These are signs of a congenital heart defect, and the children must be taken to meet a pediatric cardiologist.

Screening programs help in early detection

In newborns, symptoms such as difficulty in feeding, excessive sweating, and failure to thrive may indicate an underlying cardiac abnormality. As children grow older, symptoms such as shortness of breath, chest pain, and fainting spells may become more apparent. It is not uncommon to have no symptom during childhood and development of one as the child gets into teen years or later. Also, in certain conditions sudden onset of palpitations, fainting while doing physically exertion in young adults or teens is a common finding. In such situation time to take the child to hospital is the one of the key factor to save their life. With timely intervention most children tend to do well- this applies for both hole in heart treatment and other interventions for pediatric heart defects.

Challenges to Timely Care

If the COVID-19 pandemic has taught us one thing it is to better be prepared than being sorry! If we take current scenario only a minority of such children get advanced cardiac care. Even though in the past ten years there have been development of number of cardiac facilities there is disparity in the reach to the financially backward section. These facilities cater to the private sector and their geographical distribution make them almost out of reach.

Historically, awareness of CHDs in India has been limited, resulting in delayed diagnosis and missed opportunities for intervention. However, efforts to raise awareness and educate the public about CHDs have gained momentum in recent years. Public health campaigns, led by government agencies, non-profit organizations, and healthcare institutions, have played a crucial role in disseminating information about CHDs to communities across the country. Also, there are several programs and schemes that caters to the lesser priviliged and marginalised and hence are likely to benefit numerous children with congenital heart disease. These schemes and organisations support a hole in heart treatment as well as other complex interventions.

Screening programs for newborns is one notable initiative aimed at early detection of CHDs. These programs involve the use of pulse oximetry, a non-invasive test that measures oxygen levels in the blood, to identify infants with suspected cardiac abnormalities. In addition, Echocardiograms are also undertaken to screen children for a CHD.

Digital Media has been raising awareness about congenital heart defects

Opportunities : By integrating CHD screening into routine newborn care protocols, healthcare providers can identify at-risk infants promptly and refer them for further evaluation and management. Furthermore, the advent of social media and digital platforms has provided new avenues for raising awareness of CHDs. Non-profit organizations and advocacy groups leverage these platforms to disseminate educational materials, share personal stories of individuals affected by CHDs, and promote fundraising efforts to support research and patient care initiatives. Additionally, online support communities provide a valuable resource for individuals and families affected by CHDs, offering peer support, access to information, and opportunities for advocacy and activism. There are several programs and schemes that caters to vulnerable and marginalised and hence are likely to benefit numerous children with congenital heart disease. Supporting a NGO working in this space is a great way to contribute to help children in need.

Genesis Foundation is one of the best NGO to donate money for supporting children with congenital heart defects. 100% donations we receive from individual donors goes towards the treatment of children with no allocation towards administrative expenses. They share the progress of every child that your donation supports. Help them on their journey to Save Little Hearts.