For any parent the diagnosis of a child with a serious medical condition is heartbreaking and worrisome. From dealing with a host of emotions to accepting the diagnosis is a tumultuous journey. This takes on a whole new meaning when the parents do not have the resources to understand and research about the child’s condition and most importantly do not have the finances to support the medical treatment. These parents go through a very difficult journey in finding the right treatment to give their child a fighting chance at life.
Working for the best NGO in Haryana with regards to the treatment of congenital heart defects we have had the opportunity to interact with many such families. These parents have to navigate a complex web of financial, social and emotional barriers in getting the right treatment for their child. Dome of the big challenges that these parents have to undergo are:
Financial challenges: with improvements in science, most children born with a congenital heart defect can live almost near normal lives provided they receive timely and appropriate treatment. However, the cost for the treatment continues to remain high mostly due to the sophisticated tools and procedures involved. Pediatric cardiac care centres are limited in India and those that are there are mostly located in the private sector where the cost of treatment is extremely high. The government has been trying to support the treatment through some of the state health schemes, but the burden of disease is so high that these facilities are unable to support the vast number of children. Many parents that we support are contractual labourers, front line staff whose salaries make it impossible to support the treatment, the mental stress that these parents go through in just trying to figure out on how they will be able to save their child is excruciating. Some families are forced to borrow huge amounts of money, some sell of the only assets they have and some just give up knowing that no meter what they do they will be unable to raise enough funds. Many parents of the children we speak to often tell us that the strain of raising the appropriate finances was huge.
Logistical challenges: in countries like India the pediatric cardiac care centres are spatially not well distributed. So many of these families have to travel long distances to be able to get their child the right treatment, this poses another source of stress where the parents have to organise transport and the additional cost for the same. Once they are at the center, finding accommodation that is cheap and at the same time close to the hospital is another major challenge. We have seen so many families sleep in corridors and find whatever cheapest option so as to not add to the existing financial burden and yet be able to close to their child.
Social norms: in many remote parts of the country birth defects are still considered like a wrath of gods. Misconceptions about CHDs lead to societal judgement and isolation. Families find themselves in not only having to deal with financial challenges but also the emotional challenges of navigating a society that stigmatises their child’s condition.
Lack of Information: Many parents, especially from the lesser privileged families struggle to understand what the condition is and the nuances of the treatment. social workers play an important role in this area acting like a bridge between the hospitals and the families explaining to the family about the diagnosis and about the different types of treatment.
Thus families whose child is born with a congenital heart defect, navigate many complexities in addition to finding the appropriate treatment one needs to support These families need to be supported as much as one can and this requires a comprehensive approach. No parent should have to go through the stigma and trauma of finding a life saving treatment for their child. Hence a lot more needs to be done to ensure that families have enough financial support to help their children. This can be in terms of more state insurance schemes, an increased number of NGOs that are supporting these children. There should also be a subsidisation of costs by the hospitals to make treatment inclusive and affordable to all.
Raising awareness about the condition and the support available is another critical step in providing more support to these families. Awareness not only provides support to these families but also helps in dispelling myths and misconceptions and helping build a more supportive social environment.
Treating congenital heart defects for underprivileged families goes beyond just providing medical support – it includes addressing financial, social and educational barriers to ensure equitable access to health care.
