Written by;
Anoushka Pinto
Free Crowdfunding for India | #1 Fundraising website in India | Milaap
SURVIVOR STORY: A CAREGIVER’S PERSPECTIVE
SURVIVOR STORY: A CAREGIVER’S PERSPECTIVE
A Parent's Triumph: My Child’s Victory Over Heart Disease
A Parent's Triumph: My Child’s Victory Over Heart Disease
Published on: 30 January, 2023
Published on: 30 January, 2023
It was around mid 2021, that we were graced with the biggest blessing of our lives. My wife and I learned that we were expecting our *first* child and we were absolutely thrilled! I distributed sweets to celebrate, and was being congratulated by everyone around me. At that moment I had thought that after enduring 2 challenging years, this the beginning of a brand new journey. But, I spoke too soon.
It was around mid 2021, that we were graced with the biggest blessing of our lives. My wife and I learned that we were expecting our *first* child and we were absolutely thrilled! I distributed sweets to celebrate, and was being congratulated by everyone around me. At that moment I had thought that after enduring 2 challenging years, this the beginning of a brand new journey. But, I spoke too soon.
The start of a journey that changed everything
The start of a journey that changed everything
Flash forward to *December 2021*, my wife went into early labour and our daughter was born through a C-section, in the 8th month of pregnancy. She had to remain in neonatal care for over 10 days before we were allowed to take her home. She weighed only 1.4 kgs at the time of birth, and although she seemed healthy, the fact that she was born premature made me extremely anxious.
25 days later, we were asked to bring her back for an all-round check-up. The doctor checked her from head to toe, and ran many routine tests on her. Everything seemed normal – until they confirmed that they had detected issues in my baby’s heart. I was shocked and rather perturbed by the results and because I knew it would require a lot of money to get her treated.
Flash forward to *December 2021*, my wife went into early labour and our daughter was born through a C-section, in the 8th month of pregnancy. She had to remain in neonatal care for over 10 days before we were allowed to take her home. She weighed only 1.4 kgs at the time of birth, and although she seemed healthy, the fact that she was born premature made me extremely anxious.
25 days later, we were asked to bring her back for an all-round check-up. The doctor checked her from head to toe, and ran many routine tests on her. Everything seemed normal – until they confirmed that they had detected issues in my baby’s heart. I was shocked and rather perturbed by the results and because I knew it would require a lot of money to get her treated.
Dealing with an unforeseen diagnosis
Dealing with an unforeseen diagnosis
My baby was diagnosed with ______________. I enquired about a surgery for this condition, and the doctor told me straight away that they don’t operate on newborns as it is a very risky procedure. A child should weigh a maximum of 5kgs to undergo heart surgery. I was , and scrambled to look for other options.
My baby was diagnosed with ______________. I enquired about a surgery for this condition, and the doctor told me straight away that they don’t operate on newborns as it is a very risky procedure. A child should weigh a maximum of 5kgs to undergo heart surgery. I was , and scrambled to look for other options.
Navigating through the challenges
Navigating through the challenges
We were then referred to a superspecialty hospital in the city, and I managed to get an appointment for a consultation with a heart surgeon, who let us know that our baby had some holes in her heart. He stressed that they needed to be rectified immediately, else she could suffer from an infection or excessive fluid build-up in her lungs, which could be life-threatening.
I agreed to the surgery and asked for further details on what we needed to do. But hearing that it wouldn’t be the experienced senior-most surgeon, but a junior surgeon performing the surgery, I immediately had cold-feet and declined treatment.
Weeks later, I sought another hospital and consulted the heart surgeon there. Alas, he too said he couldn’t operate on my child for the same reason as the others – she was much too small to withstand such a complex surgical procedure.
By now, doubts had begun to cloud my mind and I wondered if my baby would be able to get surgery. The possibilities were so low and everything thereafter looked bleak. Simultaneously, I had also been dealing with my paralysed father’s medical expenses. All these unfortunate events happened to us at the same time, and pushed us to the edge of complete misery.
We were then referred to a superspecialty hospital in the city, and I managed to get an appointment for a consultation with a heart surgeon, who let us know that our baby had some holes in her heart. He stressed that they needed to be rectified immediately, else she could suffer from an infection or excessive fluid build-up in her lungs, which could be life-threatening.
I agreed to the surgery and asked for further details on what we needed to do. But hearing that it wouldn’t be the experienced senior-most surgeon, but a junior surgeon performing the surgery, I immediately had cold-feet and declined treatment.
Weeks later, I sought another hospital and consulted the heart surgeon there. Alas, he too said he couldn’t operate on my child for the same reason as the others – she was much too small to withstand such a complex surgical procedure.
By now, doubts had begun to cloud my mind and I wondered if my baby would be able to get surgery. The possibilities were so low and everything thereafter looked bleak. Simultaneously, I had also been dealing with my paralysed father’s medical expenses. All these unfortunate events happened to us at the same time, and pushed us to the edge of complete misery.
Grieving a sudden loss
Grieving a sudden loss
Prior to my daughter’s birth, I had managed to save up about INR 3 lakhs. But all of it was spent in meeting the daily NICU and medical costs, when she was born. In fact, the bills went beyond the amount I could shell out. So I was running on zero balance, and no credit at all!
Meanwhile, my father too was struggling a lot. He wouldn’t talk to us about it, but we knew that not being able to move around freely as he once did had put a lot of mental strain on him. Unable to deal with it all, my father took his own life on 25 December, 2021.
Prior to my daughter’s birth, I had managed to save up about INR 3 lakhs. But all of it was spent in meeting the daily NICU and medical costs, when she was born. In fact, the bills went beyond the amount I could shell out. So I was running on zero balance, and no credit at all!
Meanwhile, my father too was struggling a lot. He wouldn’t talk to us about it, but we knew that not being able to move around freely as he once did had put a lot of mental strain on him. Unable to deal with it all, my father took his own life on 25 December, 2021.
Finally, a breakthrough
Finally, a breakthrough
I had been vocal about my predicament with my employers at the time. Knowing my situation well, one of them told me, “Let’s do this – we’ll get together and raise funds. But first, take your baby to Narayana Hrudayalaya. I’m sure you’ll find something there.” Yet, I was still quite hesitant because I had no money whatsoever to put towards my baby’s treatment. Then again, we’d already wasted so much time shuffling through so many hospitals. What’s one more?
It took us about 3 days to speak with the surgeons and finalise things at Narayana Hrudayalaya. They reiterated the pressing need for surgery, however, they said it had to be done within the next 15 days. The entire procedure was estimated to cost INR 5 lakhs, and once again I felt completely defeated. But then I saw how babies as small as my daughter underwent heart surgery successfully and that reignited my hopes that my child could get better.
By sheer luck, I found out about the hospital’s medical fund and I approached the administration. I explained my situation to them and they asked me for a day’s time to look into my application. True to their word, they contacted me the very next day to inform me that I was eligible for a concession, bringing the estimated surgery costs down to INR 3.2 lakhs. Though I was overjoyed, I was well aware that we still had a huge obstacle that needed to be tackled – FUNDS.
I had been vocal about my predicament with my employers at the time. Knowing my situation well, one of them told me, “Let’s do this – we’ll get together and raise funds. But first, take your baby to Narayana Hrudayalaya. I’m sure you’ll find something there.” Yet, I was still quite hesitant because I had no money whatsoever to put towards my baby’s treatment. Then again, we’d already wasted so much time shuffling through so many hospitals. What’s one more?
It took us about 3 days to speak with the surgeons and finalise things at Narayana Hrudayalaya. They reiterated the pressing need for surgery, however, they said it had to be done within the next 15 days. The entire procedure was estimated to cost INR 5 lakhs, and once again I felt completely defeated. But then I saw how babies as small as my daughter underwent heart surgery successfully and that reignited my hopes that my child could get better.
By sheer luck, I found out about the hospital’s medical fund and I approached the administration. I explained my situation to them and they asked me for a day’s time to look into my application. True to their word, they contacted me the very next day to inform me that I was eligible for a concession, bringing the estimated surgery costs down to INR 3.2 lakhs. Though I was overjoyed, I was well aware that we still had a huge obstacle that needed to be tackled – FUNDS.
How Milaap helped
How Milaap helped
While we had been making arrangements for the surgery at the hospital, my employer had started a fundraiser in Milaap to help with my baby’s treatment expenses. I had no idea what fundraising was, and expressed my concerns to my employer. But she assured me that it wasn’t a mammoth task, “Don’t worry, just follow my instructions, and you will receive the help you need.”
She told me to gather all my baby’s medical documents and estimation letters to add to the fundraiser, then asked me to share the link to the fundraiser over Whatsapp with everyone I knew. I’d been working in Bangalore for nearly 10 years then, and I knew about 200 to 300 people. So I shared it with all of them, and they all donated some amount within their capacity.
What happened after this caught me completely off guard. Within 6 days of setting up the fundraiser, we had managed to raise the full goal amount. My employer told me that we finally had INR 3.2 lakhs to pay for my baby’s surgery and I couldn’t hold back my tears. I was overwhelmed with happiness and gratitude. By the grace of God and with help from so many kind donors, my baby successfully underwent heart surgery in February 2022.
While we had been making arrangements for the surgery at the hospital, my employer had started a fundraiser in Milaap to help with my baby’s treatment expenses. I had no idea what fundraising was, and expressed my concerns to my employer. But she assured me that it wasn’t a mammoth task, “Don’t worry, just follow my instructions, and you will receive the help you need.”
She told me to gather all my baby’s medical documents and estimation letters to add to the fundraiser, then asked me to share the link to the fundraiser over Whatsapp with everyone I knew. I’d been working in Bangalore for nearly 10 years then, and I knew about 200 to 300 people. So I shared it with all of them, and they all donated some amount within their capacity.
What happened after this caught me completely off guard. Within 6 days of setting up the fundraiser, we had managed to raise the full goal amount. My employer told me that we finally had INR 3.2 lakhs to pay for my baby’s surgery and I couldn’t hold back my tears. I was overwhelmed with happiness and gratitude. By the grace of God and with help from so many kind donors, my baby successfully underwent heart surgery in February 2022.
Finding strength through adversity: Parting message
Finding strength through adversity: Parting message
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Written by;
Anoushka Pinto