This article is not about children who are eliminated in the early stages of pregnancy. That is a related but different story. In that story, if a foetus is found to have any anomalies (according to various tests), a common advice or thought is to terminate the pregnancy. Nobody is either prepared or advised to raise a child with disability or complex medical problems. But this article is not about them.
This article is about foetuses that manage to survive pregnancy and come into this world with various kinds of defects/health problems or develop complex medical problems in early childhood. And my question at this moment is just one. Who is going to ensure their rights including survival and growth?
WHO (2016, September) provides us with the following facts regarding situation that exists worldwide[i]:
- An estimated 303 000 newborns die within 4 weeks of birth every year, worldwide, due to congenital anomalies.
- The most common, severe congenital anomalies are heart defects, neural tube defects, and Down syndrome.
- Although congenital anomalies may be the result of one or more genetic, infectious, nutritional, or environmental factors, it is often difficult to identify the exact causes.
- Some congenital anomalies can be prevented. Vaccination, adequate intake of folic acid or iodine through fortification of staple foods or supplementation, and adequate antenatal care are just 3 examples of prevention methods.
At India’s level, although no specific and reliable data on monitoring of children born with congenital health problems was found to be available or accessible, Bhide and Kar (2018) estimate that as many as 472,177 (421,652 to 522,676) births affected by congenital anomalies may be occurring in India each year[ii]. While this is likely to be under-estimation as some anomalies may not have been reported or may get reported or screened later in children, this is a clear indication that congenital birth anomalies are not rare in India.
The other important aspect that has to be acknowledged is that while some of such anomalies can be prevented through low cost strategies, some cannot be prevented and will require significant expenses. Some children will require frequent hospital visits and tests. Some children will require intensive care as well as expensive surgeries (costing lakhs of rupees). If you don’t know such families personally, go online and check crowd funding platforms such as Ketto, Milaap, ImpactGuru, and so on.
I looked at the fundraising campaigns on Ketto. As on 26 October 2018, 83% of all the money being raised for health was targeted at treatment of children. Further, 92% of all the money being raised for children/child related concerns was targeted for treatment of children. At the time of collation of this data from Ketto website by me, 6 campaigns were running in the ‘children’ category with total target of INR 3990000; and 6 campaigns were running in the ‘health’ category with total target of INR 28100000.
While such disaggregated data was not available for Milaap, their team shared the following data (on 9 November 2018): 19595 fundraising campaigns focused on health problems were running with target to raise total of INR 1,050,086,647,520. Percentage of the funds that are targeting treatment of health problems of children could not be calculated as their filters for segregating data were different and did not allow such a calculation. However, according to the information from Milaap team, pediatric liver transplants and cancer care constituted majority of the fundraisers for children’s health problems.
This clearly suggests the following two things to begin with:
- Treatment of congenital anomalies and medical treatment of children requires fundraising, as there seems to be no other way for several such children and their families.
- Contribution of the State, i.e. the Government is barely fulfilling needs of such families and children. And the State needs to do something drastic to change this scenario for children who require urgent intervention.
The ongoing questions remain: Who would be bearing such costs? And if all these costs are to be borne by parents, how will they afford this? And even if they can afford one such surgery, what about those who require more than one surgery or ongoing treatment requiring huge investments of time, energy, and money. What kind of support is available in India for such children and their parents?
The role of State
According to the website of National Health Mission (by the Govt. of India), Rashtriya Bal Swasthya Karyakram (RBSK) is in place with the aim of early identification and early intervention for children from birth to 18 years to cover 4 ‘D’s viz. Defects at birth, Deficiencies, Diseases, Development delays including disability[iii]. This is a start but not enough. As of now, there appears to be no scheme/program/service that covers all children with congenital anomalies and/or complex medical health problems. What will happen to such children in absence of treatment, as well as human and financial support? This is not too difficult to imagine. Such children will not survive. And even if they do, their quality of life is likely to be such that they will not be able to enjoy all the rights and opportunities that should have been theirs.
The spaces for support for such children and families barely exist in India. Need is huge but examples of such spaces are few. On the other hand, we have list of organizations working in other countries on such issues. For example, look at this: https://www.cdc.gov/ncbddd/birthdefects/families-support.html
Elsewhere, there are also advocacy groups such as Little Lobbyists (Check them out here: https://littlelobbyists.org/ ) who are working towards protecting and expanding rights of children with complex medical needs and disabilities. Although India has a strong advocacy groups for persons with disabilities, the focus on children with various congenital anomalies and complex medical needs is yet not receiving adequate attention. There is change for some children but not all.
For how long can we let children die because of lack of access to health care and treatment or lack of money? While each of us has to become more aware of needs of such families, the role of State cannot be ignored. Children with pre-existing conditions also need to be covered by insurance. Else, I believe that the Govt. should cover most of the costs- not just for families below poverty line but also for various other families that will be pushed towards poverty and financial distress as they try to manage the cost of care and treatment.
The State has to protect such children from being eliminated. Overlooking their urgent needs does amount to death, low quality of life, and violation of rights. Each child has right to a present and a future where he/she is protected and has access to opportunities and resources that help him/her evolve.
We are not doing enough. We need to.
Acknowledgements: I thank Milaap team for sharing the data in the form that they could. Some of the crowd funding platforms did not respond to the request for data. I hope they do so in future.
I hope all the crowd funding platforms realize that they can be even stronger drivers for changing our country through the data that they maintain and how they maintain it.
[i] See WHO page at: http://www.who.int/news-room/fact-sheets/detail/congenital-anomalies
[ii] The paper is available at: https://bmcpediatr.biomedcentral.com/articles/10.1186/s12887-018-1149-0