Vikhroli resident Sweden D'Souza, diagnosed with end-stage heart disease at 17, recounts her struggle to find the right donor and the months of confinement post surgery, to tasting freedom again
Sweden D'Souza takes a train daily to her college in Kurla
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"My friends were shocked when they came to know about my condition. And now, they literally pamper me, take notes for me if I fall sick. This journey has taught me to be strong and not to ever give up hope," said Sweden D'Souza, 19, a resident of Vikhroli who became the first paediatric patient to undergo heart transplant in Mumbai in 2016 at Fortis Hospital, Mulund.
On International Women's Day, mid-day spoke to D'Souza whose life took a bitter turn at sweet 17, when she was diagnosed with end-stage heart disease. The bookworm and a topper of her college had to stop going for lectures altogether. "I cried my heart out when I had to stop going to college, because I had always dreamed of studying well and having a career to support my family. Now, two years later, I am finally back in college," said D'Souza, who took admission in BMS in Bunt's Sangha College in 2017.
The teen with her mother Regina at their Vikhroli home. Pics/Sayyed Sameer Abedi
Such a long journey
But her struggle — from finding a donor to standing on her own feet to return to college — has been arduous. After consulting several doctors, she found that heart transplant was the only way, but it was a challenge to find the right donor. Things, however, started falling in place when the family of a donor in Madhya Pradesh came forward to give her the precious organ. And, on January 3, she made history by becoming the youngest patient ever to undergo a heart transplant in Mumbai.
It was far from over at that point though — for months, she had to stay at home, in a 10x6 feet air-conditioned room, to ensure infections were kept at bay. "It was a struggle for me; forget the house, I couldn't even venture out of that room. Anytime a friend called me to celebrate a festival or a birthday, I had to turn down the invitation. They would then send me pictures to cheer me up. I spent my days reading books or watching TV," said D'Souza.
"Though the heart transplant was successful, I had to be extremely careful and avoid all contact with the outside world for a long time, because of the risk pollution, and even infections, posed."
Facing the fear
D'Souza has been put on immunosuppressants, which she has to take for the rest of her life. Her parents chalked out a timetable for medication administration and followed it up regularly with the transplant team.
Now, she can travel to her college in Kurla on her own in train, and live her life, almost like before. "When I was in Std XI, I couldn't even climb stairs properly. But now, I travel by train every day to Kurla, and then take a bus till college. The fear has gone," she exulted.
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