Congenital Heart defects are the most common birth defects in the world and in India. And yet, not many people are aware of this leading defect both among the general masses and the medical fraternity which forms the first line of medical care servicing people across the country.
In India every year more than 200,000 children are born with a heart defect. The burden of disease is so massive that the management of this condition will require a collaborative effort by the Government, corporate sector, Children’s Healthcare Foundation and Non-Governmental Organizations (NGOS).
There are a few NGOs who have been working for the last many decades to create am impact in this often overlooked yet critical health concern. Genesis Foundation and the Children Heart Foundation are some of these. The main areas where these NGOs have been able to create a huge impact are:
1) Build Awareness: awareness about congenital heart defects is scanty amongst the general population. When this disease hits families who are not that educated and do not have the resources to access information and treatment, the consequences are terrible. Most congenital heart defects can be treated today if they are diagnosed and treated on time. A timely diagnosis is possible only when people are aware of the disease and the symptoms and what steps need to be taken upon a diagnosis. Delays in diagnosis and treatment, can have adverse consequences on the child and that is sad. Children’s Healthcare Foundations have bene working along with the medical fraternity to build awareness about the disease and spreading information about what needs to be done. Genesis Foundation has been working with their partner hospitals to conduct screening camps at the grassroot level to build awareness among people about the symptoms and in helping children diagnosed with the same access timely treatment.
2) Financial Support: The treatment for congenital heart defects depends on the type of the defect. On an average the treatment varies between Rs 1.5 lakhs – 5 lakhs. For many families which earn enough only to be able to put food on the table this expense is huge. Many such families fired by the wish to save their child are very often pushed into a debt trap or end up selling all their assets to be able to pay for the treatment. In many cases, where families are unable to raise the funds, children especially girls, are denied access to a life-changing treatment leading to adverse long-term complications, including death. Children Heart Foundation India like Genesis Foundation provide financial support to families who earn a monthly income of Rs 20,000 or lesser and hence cannot afford the cost of the treatment of their child. Till date this children heart foundation India has given life a chance to over 4000 children across the country.
3) Emotional support to families: a diagnosis of a congenital heart defect can be emotionally overwhelming and distressing for most parents. It is common for most parents to struggle with the pain, frustration, anger, guilt and many other emotions that accompany a diagnosis. To add to this, getting the right information regarding their child’s condition, keeping a track of the child’s progress and managing the finances of the treatment adds to their bucket of worries. It is normal for parents to need a huge amount of counselling and emotional support to get through the diagnosis and do what it takes to help their child. NGOs and children’s health care foundation have been playing a big role in handholding these families.
4) Support to Girl Children : Given the cost of the treatment and the social customs and myths that still influence a lot of the decisions for families in our country, many girls born with a heart defect are denied access to treatment. Parents feel that the scar of the surgery will pose a challenge in getting their girl married and the treatment will interfere with her ability to bear a child. Also, for many families which struggle to make ends meet and have more than one child, very often they need to choose between education of one child over the treatment of another, for many girls that means a denial of a life changing treatment. NGOs in India have been working tirelessly to change this by counselling parents and working with them to dispel myths and ensuring that all children get access to the best treatment.
5) Saving Lives: More than anything else children’s health care foundations working in the area of congenital heart defects are responsible along with the government of saving many lives and gifting many families the option of having their child next to them.
Congenital Heart Defects continue to impact many children born in India. We need a comprehensive approval that involves the Government, NGOs and the private sector to address this.
References
Saxena A. Congenital Heart Disease in India: A Status Report. Indian Pediatr. 2018 Dec 15;55(12):1075-1082. PMID: 30745481.
Saxena A, Mehta A, Sharma M, Salhan S, Kalaivani M, Ramakrishnan S, Juneja R. Birth prevalence of congenital heart disease: A cross-sectional observational study from North India. Ann Pediatr Cardiol. 2016 Sep-Dec;9(3):205-9. doi: 10.4103/0974-2069.189122. PMID: 27625516; PMCID: PMC5007927.
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