Written on behalf of Anjali’s mother – Aman. There were various interviews that took place between the Genesis Foundation team and both parents. It encapsulates the journey of a stay-at-home mother, living in Baliawas, a village in Haryana who looks after her children to her full capacity while her husband works hard to make ends meet… no matter what hardship families like hers face one thing is always set in stone – the love for their child never ceases, and they never leave the battle of Congenital Heart Defects without a fight.
I adore her smile,
I cherish her hugs,
I admire her heart,
But most all ….
I love that she is my daughter.
We welcomed our precious daughter, Anjali, into this world on 24th November 2012. She was such a blessing, and we were overwhelmed with love for her. We had no idea that anything was wrong with her until the doctors told us that she had a heart problem called Tetralogy of Fallot – a defect that causes oxygen-poor blood to flow out of the heart and into the rest of the body.
It sounded scary. We were completely caught off guard with this news. Our gorgeous daughter was diagnosed with a heart defect, what were we supposed to do? We have another child, he was fine. We later went onto having another daughter, and she was fine too.
According to the doctor, there was a hole in the lower chamber of her heart, they call it a Ventricular Septal Defect or VSD with narrowing of the Pulmonary Valve (Pulmonary Stenosis). Due to which the oxygen content in her blood was very low (only 30%) and to worsen the condition the blood flow to lungs was also less.
The doctor explained to us that this was a critical illness – I thought to myself, “how do I help save the life of critically ill child?” We were totally stumped, our financial state was not good. The only thing we could do was consult the local doctor, who was affordable, the only one we really knew of.
The medications prescribed were continued till 2017, when Anjali was around four years old. There had been no improvement. It looked to me like she has not been growing at a steady pace, she has been so weak that I remember getting off the bed was something she couldn’t even do on her own.
Every winter, she was susceptible to catching a cold and cough, she also had frequent bouts of fainting that worried us beyond belief. We decided it was maybe time to figure something different out. Luckily, our local doctor told us about an NGO – Genesis Foundation who supports children like Anjali. We didn’t waste one minute, we got on the phone straight away and they asked us to bring Anjali to Max Hospital, in Saket. It was a two hour drive, we were ready.
For the first time we felt, maybe our prayers had been answered.
An Echo had been conducted which showed that her pulmonary artery had not grown the way it should have. The date of the surgery was set to July 13, 2017 and she was so critical at the time, I remember my body going cold with fear when she had to be resuscitated and then stabilised right in front of our eyes.
The doctor’s told us that the cost would be around Rs 2.2 Lakhs, we were able to contribute around Rs 25,000 that Anil had managed to put together by taking loans and the rest was god’s gift from Genesis Foundation.
The nightmare slowly began to ease when Anjali was finally stable. She was then wheeled in for the first stage of surgery – a BT Shunt. The post-surgery period the Doctors told us was most critical. Imagine, she was four years old only and she had already seen the walls of an operating theatre, and on such high doses of medication. Her recovery was slow, we were there by her side at the hospital for around ten days… but she made progress, step by step. When she got discharged she was stable, and we were told to be vigilant about long-term follow up. It wasn’t one of those things that we could simply forget, we had to make sure that every follow up and everything the Doctor told us was adhered to, by Anil, my in-laws, me – everyone.
We were all in it together.
Yes, it took me a long time to wrap my head around all the medical terminology, I still don’t always understand it. But there is one thing I know, one thing I breathe and feel through every pore of my body – that my child has gone battled a lot at such a tender age.
No matter how many smiles I forced, how many hugs I got, or how many times my husband reassured me that everything would be fine — I had an ocean of fear constantly beating me down inside.
At the back of my mind, I knew there would be a second surgery and this always made me very concerned about Anjali. I started questioning myself, would she be able to endure such pain again?
The months went by and we decided to enrol her into school with her brother. During one of her follow-ups the doctor told us that Anjali was ready for her second surgery. Genesis Foundation had stayed in touch with us, so when we were given this news – with no questions, they took over the financial responsibility of her surgery.
On, October 24, 2018, Anjali was finally operated. The Doctor told us that everything went as expected. The fight was scary and watching her lay in that huge hospital bed with wires hooked to every part of her body again was torture. But, I admired her courage.
Her surgery, extended hospital stays, and medical issues have just shown us how strong she is and how much strength we have as well.
Under the care of Max Hospital and with the support of Genesis Foundation, Anjali is now on the road to living a “normal” life. She routinely visits the hospital every 3 months for check-ups.
She will start going back to school soon, and unlike other girls in the village, I don't want her to get married at a young age. I want my child to study well, get a job and live an independent life. I want her to follow her dreams and choose any profession of her choice – she has already decided, a Doctor!
I smile whenever I watch my daughter run and play with her friends or siblings.
It’s always the small things – now she can do something as simple as get off a bed without need help. We always keep an extra watch over her after everything we have been through together as a family, she will always be our brave heart.