Following are the words of Priyal, who works closely with Genesis Foundation via the Aara Project, in her vision to work with a foundation working for children with Congenital Heart Defects.
My husband & I have been self-made professionals for more than a decade. Have had the privilege of being educated in some of the premier institutions, found jobs and have been doing well to sustain ourselves and even indulge at times. Our experiences and exposure have helped us being aware of the world around us, and perhaps we assumed we belong to the “well aware” category.
I speak for myself, but I couldn’t have been more wrong. Our journey with our first born opened the window to the world I never knew much about - children born with heart defects or Congenital Heart Defects (CHD).
I remember this term very well, being a reporter covering the insurance sector- my first story was on child policies. They were a new phenomenon around 2004. And one of the exclusions in child policies was CHD. I still remember asking someone that time what it means.
Cut to 2016, and here I heard those words again. This time for my, Aara.
It did not sink in easily, not for a long time. The shock of finding out that your few days old daughter has a congenital defect is mind-numbing. But then with not much time before us, we discovered the world of Paediatric Cardiology. Sorry for my ignorance but I didn’t even know such a specialized field existed. I was mistaken!
In search of finding best hospitals, doctors and diagnosis I remained engulfed in thoughts of - WHY ME, WHY US, WHY OUR LITTLE BABY? But when I visited two hospitals and clinics, I saw queues of anxious parents clutching their children, from newborns to 3-4 years…some even older; I soon realized I am not the only one.
I also remember one of the doctors telling me - A hole in the heart is nothing! Until then my understanding was - A HOLE IN THE HEART! Oh My God!
I was mistaken yet again!
CHD are of various kinds, to be honest, I have forgotten the count. A lot of them curable, surgically of course. One needs constant monitoring, but more or less the child can live a normal life. And this was what was told to me repeatedly by several doctors on many occasions.
But then there is a CATCH! How many can afford it? Especially when it can take considerable for recovery, and it varies from child to child.
In our three month journey in the hospital, we saw several children recovering in a matter of days or there were cases such as one baby who was in the hospital from the second day of his birth and by the time we left the hospital it was already seven months for him on that ICU bed, many cases of up to four to five months of hospitalization.
We also saw many cases where kids could not make it!
Many families were trying to make their end meet. Some sold their houses, taking loans and credits from family, some are knocking the doors of NGOs… so on and so forth.
During my hospital stay, I met a gentleman working for Genesis Foundation. For my journalist/PR friends - yes it’s the venture by Genesis’s - Prema Sagar. This foundation is for children suffering from heart diseases.
The gentleman I met was Programme Manager, Pediatric Cardiology in Genesis Foundation and raising funds for the same. We met at the hospital as he had come to meet a child the foundation was sponsoring. What he told me was a heart-wrenching story of a baby who did not survive due to the long waiting lists at hospitals, and a lack of funds.
Coming to the funds in healthcare. CSR is mandatory for companies now by law, but most of the CSR goes for education as its easier and simpler. Health has not found many takers. And that brings us to the question what is the point of education when a child does not survive due to lack of health assistance? We have to address health first.
I remember our first day at Jaypee Hospital in Noida where we met some of the finest doctors. Our anxious minds were comforted by a family we met in the waiting room. They were from Mumbai and their 12-year old son was getting discharged after being brought in an air ambulance in January 2016. His parents told us that nothing short of a miracle has happened for them as most hospitals in Mumbai had given up. And here there were gleaming with joy after getting discharged in March and giving us much needed assurance, strength, and comfort.
Unfortunately in May when Aara was still in the ICU, we saw the same family back. The boy had developed an infection and had to be treated for six weeks. We met every day and became each other’s support system. When Aara shifted in the room from ICU, they were in the ward next to us. The boy and I used to play scrabble in our precious little free time- for him, it was a distraction from the pain he was going through, and for me, it was again a bit of distraction to get charged up again to take care of my daughter.
Few days after we got discharged and he was still there we got to know that the injections were not helping and he had to undergo a very major operation. His father called Anami, my husband and told us his plight and inability to raise funds.
Anami then created an account for him in a crowdfunding website and in three days after exceptional support from his office colleagues and some of my colleagues and friends - we managed to raise close to Rs 3.5 lakh and his surgery was done.
Today he is back in Mumbai and is doing well in school. It gives us a bit of satisfaction we could do something for him. In fact, Aara’s dear doctor told me the day Aara left us - that not only she touched our lives but she touched the life of that little boy.
After few months of my daughters passing I met the Genesis Foundation team, a foundation working for children from underprivileged backgrounds, with CHD. We had expressed our desire to take the purpose of our daughter's life forward and to support kids with heart ailments. GF gave us the platform, and that was how The Aara Project was born on Feb 7th 2017, Aara's first birthday.
Today, we are in the second year of the project yet we have only started – we have supported 30 kids and counting, after all it’s all about touching the hearts in need.
Contributed by Priyal Bhattacharyya