The Impact of Congenital Heart Disease on Lesser privileged Families
November 20, 2023 | Contributed by Preeti Kumar
Imagine being in a situation where you know your child is not developing well but you do not understand the cause or reason for the same. Imagine being in a situation where you do not understand what are the next steps to be taken once your child has been diagnosed with a defect. Imagine being in a situation where you do not have the money to support a
GF member Roop Singh explaining parents about CHD
Children heart treatment.
Difficult right? Well, that is the reality of most of the parents whose children we support. These children are born with a congenital heart defect. In cases where the defect is critical the symptoms surface either during pregnancy or right after birth pushing the parents to look for a treatment to make their child survive.
In cases where there the defects are not so critical the symptoms appear after a few years leading the parents to look for a treatment. These can be critical defects requiring immediate surgical interventions or milder defects which can be managed with other techniques such as heart hole treatment without surgery.
The diagnosis and the realisation that their child has a defect in the heart that they are born with is difficult for any parent to understand, process and act on. Add to it parents who do not have much access to the “Google doctors” and friends that they can call on, it throws them on a roller coaster that is very different.
Rushing from one doctor to another to find the right diagnosis and the treatment is something many of the parents of our children have had to go through – and an exercise that no parent should ever have to go through. To add to it once they finally get to a doctor and understand the treatment involved, organising the expenses of the treatment is a journey that one cannot even imagine.
Most of the insurance schemes do not cover child heart treatment. Some Government hospitals do offer facilities, but the large demand puts a lot of pressure on the government system – congenital heart defects are one of the most common birth defects.
In such circumstances, organising the funds to treat their child – to ensure that their child will get a chance at life is a traumatic, worrisome and tumultuous journey the parents have to embark on. In the quiet corners of our world, where the resources are scarce and access to specialised healthcare is a distant dream for many, the silent struggle of families facing Congenital Heart Defects is a story which is very different from the realities we face.
We met Shivansh’s (name changed) family from Uttar Pradesh. This is a family that symbolises what true selfless love can do. Their worlds took an unexpected turn when their young child was diagnosed with a critical CHD. As the news went through the family the earthquake that the diagnosis caused was palpable. Having lost his mother many years ago, his maternal uncle was shouldering the responsibility of fighting for Shivansh. He became the unsung hero who juggling his responsibilities also silently shouldered the emotional burden that comes with a child whose heart demands more than the limited means they possessed.
The family went through sleepless nights, hushed conversations and heated arguments as they navigated their way through medical appointments, medical complexities, financial constraints and living the fear that the symbol of their sister- her only son would not make it.
Yet amid the struggle there was a resilience in the family – an underlying power to fight to save their late sister’s only surviving child. The family was wrecked with worry but also had the fierce determination to ensure that their child’s heart gets the care it deserves- that their child gets a fighting chance at life. It’s a mirror that showcases the indomitable spirit that thrives in the hearts of the lesser privileged families we interact with – a sprit that find strength in the face of adversity.
These stories deal with more than just curing CHD; they also tell of acts of incredible bravery, love that knows no bounds, and fortitude in making sure every child has an opportunity at life.