Building Awareness About Little Hearts Born with a Heart Defect this World Heart Day
September 29, 2023 | Contributed by Preeti Kumar
In the last few decades, non-communicable diseases have gained prominence due to their impact on global health. Cardiovascular diseases in particular, are one of the largest causes of mortality and disability globally. The World Heart Federation in partnership with the World Health Organization chose September 29 to be observed as World Heart Day. The intention was to raise the world’s attention to the importance of promoting cardiovascular health.
This World Heart Day, as we all collectively focus on the role of our heart health, it is equally important to focus our attention on little hearts that are born with a heart defect. Yes, that is right – little babies are born with a defect in their heart, or simply put with a hole in heart by birth. These are not the result of poor heart health but are structural defects that a child is born with and impact the chances of survival and the quality the child is able to lead in the future.
In India alone a staggering 200,000 children plus are born with a congenital heart defect (CHD). 70,000 of these children have a critical defect which needs immediate attention for the child to be able to survive till his/her first birthday. Sadly, only 25% of these children are able to access the treatment needed. Lack of awareness and funds remain the biggest obstacles between life and death. The irony lies in the fact that in most cases a single intervention can give the child a chance to live a near normal life – and yes, many children continue to be deprived of this access to the lifesaving treatment.
Imagine the fragile heartbeat of a newborn, innocent eyes staring into a world of possibilities and tiny chest concealing a hidden battle, congenital heart defects are silent adversaries that strike these children from birth. Given a birth prevalence of 1.5-1.7/live births, congenital heart defects are one of the most common birth defects.
But these numbers, though staggering fail to convey the emotional roller coaster that families go through when their little ones are diagnosed with a CHD. No parent ever wants to hear that their child has a birth defect – and neither does any parent want to see their child suffer just because they did not have the resources to access the treatment for the defect- no parent.
The journey that these parents have to embark on is not an easy one, starting from multiple rounds of doctors and hospitals, to interventions and surgeries and sleepless nights of worry. Worry of what the future will unfold and worry of how they will ever arrange the funds required for the treatment of their child.
The children we support at the Foundation come from families that earn a monthly income of Rs 20,000 or less. Many of these parents have never stepped out of their villages and not heard of big terms related to the human body, especially of a hole in heart by birth. And yet, they push their way and find the right support to do what they can do to save their little child. For some parents, the journey is different – clouded by misinformation about the condition some of them leave the child to fate and do not reach out to the assumption that they would never be able to afford the treatment.
In many parts of the country where local and traditional medicine continue to dominate there are horrific stories, we hear of the treatment given to children born with a heart defect. This includes stamping their hearts to engaging in multiple rituals and worships in the faith and a divine intervention will fix the little heart of a child.
This is where we are trying to make a difference. As the first step we are working hard to build awareness of the condition and the fact that it can be treated – that the child can live a normal life with just one intervention and that today there is financial support available to help with the funds.
On the other hand, we work with our doctors and hospitals to ensure that every child we support gets the best treatment possible – as every life is precious.
This world heart day let us come to honour these brave hearts and they powerful families who fight for them. Help us raise our voices to create awareness about congenital heart defects and the importance of early detection and intervention. Let us pledge to support organizations and foundations working tirelessly to improve the lives of these children and their families.
Every child born with a CHD is a story waiting to be told, a journey filled with countless challenges and triumphs. Together we can make a difference and ensure that these little hearts continue to beat with strength, resilience and hope.
This World Heart Day,
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