Why raising awareness about Congenital Heart Defects is the need of the hour? - Blog

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Why raising awareness about Congenital Heart Defects is the need of the hour?

August 28, 2023 | Contributed by Priyansha

Heart disease in children, heart care foundation in india

With congenital heart defects(CHD) becoming a major contributor to infant mortality from 1990 to 2017, India represents an interesting microcosm of this global situation. According to the data presented in the status report on CHD in the country, the northern and eastern parts of India have high birth rates, which indirectly corresponds to a higher probability of babies being born with CHD.

Image of hands with hearts

The ultimate paradox that was reported regarding heart disease in children was the lack of cardiac care centers in regions with a high burden of CHD but an increasing number in low-burden areas. This uneven distribution highlights the lack of proper resource availability and the need for a more efficient government action plan to tackle this disease.

Managing children with heart disease is equivalent to a race against time. Prompt diagnosis and treatment are essential for improving the likelihood of survival. The following factors serve as barriers and roadblocks to inadequate cardiac care for infants and children with CHD:

Lack of awareness and delay in diagnosis

Despite the fact that hospital births have increased significantly as a result of government initiatives, there are still a substantial number of home births in the absence of medical personnel. This can decrease the survival rate of the infants due to a lack of timely intervention. On the other hand, hospital births can also be harmful if frontline healthcare providers and primary caregivers are not aware of the problem of CHD, and some of them think that a child with CHD is destined and will never be able to lead a fruitful life, even with treatment.

Uneven distribution of resources

As reported in the status report, the uneven distribution of care centers is a major downplay, even if the community had grasped the seriousness of the situation. Safe transport of infants with constant monitoring of the risk of developing hypothermia and hypoglycemia is a far-fetched dream that must be undertaken for more efficiency in wiping this burden. As a Heart Care Foundation in India we have been constantly making constant efforts play a pivotal role in addressing this distribution disparity by supporting CHD diagnosed kids.

Financial restricts:

It is the biggest disadvantage for families with low incomes who seek cardiac care, as they are expected to pay for the treatment from their own pockets. Medical insurance doesn’t cover CHD. While government schemes, charitable organizations, and NGOs do exist, awareness about them is very low. Even though the treatment options at private hospitals are advanced with a good prognosis, the never-ending bills exceed affordability. In addition, public hospitals have an enormous patient load with long waiting lists, which further delays treatment.

Attitude of community for towards healthcare

Hands holding heart

Sociocultural beliefs and illiteracy worsen the care that children receive because families may wait to seek medical attention until symptoms appear or the condition gets worse.

To reduce the prevalence of this issue, investments in quality resources and healthcare infrastructure have to be made for an equitable distribution among those in need. The following measures can be employed:

  • Sensitization of the community through electronic and print media Health camps and awareness sessions are to be organized for the secluded areas. Primary healthcare workers are also to be made aware of the necessity of diagnosis and follow-up care.
  • Screening programs should be conducted to cover areas with limited access to health care facilities.
  • Proper geographical distribution of cardiac care centers with efficient staffing is the need of the hour. The community should also be informed about the location of such centers to avoid traveling long distances. Such centers should also be equipped with data management skills to record the prevalence of CHD geographically.
  • Financial support is to be deployed to all the families in need at the earliest hour possible to avoid delays in treatment despite the presence of all necessary resources. Poor families can also get financial help from the Prime Minister’s Relief Fund and Chief Minister’s Relief Fund. The primary pediatrician should organize informative sessions to inform families about such programs.

Conclusion

While the government must manage the domains of infrastructure and strategies at the national level, healthcare personnel and the general population should play a role in the community setting. The frontline workers should ensure a timely diagnosis and follow-up care for the infant, with proper instructions offered to the families. Alongside health camps and awareness events such as marathons, fundraising events should also be organized to encourage active parental and societal participation.

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