Joining the fight for children born with Congenital Heart Defects
August 9, 2018 | Contributed by R Srivatsan
“Arise! Awake! And stop not until the goal is reached.”
Congenital Heart Defects refers to the structural heart defects during birth of a child. Worldwide, the incidence of Congenital Heart Defects (CHD) is 8 per 1000 live births. The exact cause for CHD cannot be ascertained. As there are multiple causes, genetic, gestational diabetes, and intake of certain kinds of medicines during pregnancy etc.
Ten years ago one of the doctors from Agra informed me that a girl, Priya seven years old had a problem with her heart and asked me if I could take the child to AIIMS for treatment. Since I had worked in the healthcare domain, I knew few doctors in AIIMS and told the doctor that I would definitely try my level best to help the girl. It was August, Priya and her parents had come to Delhi for a check-up.
I still remember, she was a young, bright school-going girl and full of energy. Nobody in their wildest dream could imagine that she was suffering with a heart defect. I took her to the concerned doctor and just by placing the stethoscope the doctor told me that Priya cannot be cured. I did not understand. I asked him repeatedly, “why?” The doctor informed me that since the child came late, much damage had been done to the lungs which in turn had affected the lung pressure, hence she cannot be treated. Still perplexed, I asked the doctor what the options were, was there nothing else that could be done? And his answer till date I will never forget – “Nature will take its course.” I was in disbelief. I wanted to break down crying, but I didn’t express it. Instead, I plucked up the courage to take the parents out and break the news to them. I had to be so careful, to ensure that I explained it in the best possible way. But in this situation, what’s the best possible way?
They were devastated. I could tell, my words had shaken their beliefs, their faith. I went home that night, and could not sleep. Not one wink. I kept wondering, what can be done to save Priya? There had to be something.
Three wakes later, I got a call from Priya’s father who broke the news, that Priya was no more.
This was one turning point in my life, it was that moment, that made me decide I had to explore more on Pediatric Cardiology in India.
I visited AIIMS again and started interacting with doctors. That is when I realized that CHD was a major problem in India. With 200,000 children born every year with CHD and less than 40,000 children getting operated there was a huge waiting list of children with CHD.
Something had to be done.
I came across Genesis Foundation and without a doubt, started volunteering with them. Started doing hospital visits, met the doctors, parents and the children. I was honestly impressed with their style of functioning and decided to join in 2015. Over the past three years, I have travelled extensively across the country, met with many doctors, children with CHD and their respectable families.
There were times when a child who had been diagnosed with CHD was inevitably not going to be able to pull through but with progress of technology and more hospitals these children can be treated now. Through fetal echocardiography it is possible to detect CHD before pregnancy. Parents can be informed in advance and proper steps canbe taken during delivery. The baby can be delivered in a hospital with a reputable, good facility for Pediatric Cardiac Surgery.
What a break-through has been made! Nowadays, there is 3-dimensional printing where surgeons can visualise complex defects before surgery. This leaves them better informed and prepared. Certain types of holes can be closed in a Cath lab using non-invasive methods and in actual fact, when you make a donation for children suffering in India from CHD through Genesis Foundation, using these technologies and techniques is extremely beneficial and regularly used.
Of course, there are always challenges – as children with CHD grow into adults could face a few complications. For e.g. an adult who has previously undergone Tetralogy of Fallot (TOF) during infancy might require implantation of the Pulmonary Valve. These patients are classified as Adult Congenital Heart Defects patients (ACHD).
The awareness level amongst parents and physicians about CHD is low in certain parts of India and of course funding one of the biggest problems. There are government schemes, however they are not properly implemented and there aren’t many companies who come forward to part their CSR funds and make donation for children suffering in India from CHD. We need more companies to come forward and work with foundations like ours in helping children with CHD, because these children need a chance to live, and the opportunity is there for them to live a close to normal life.