Verified By Dr Smita Malhotra August 27, 2023
1511Doctor! doctor! See! Sroy is dancing! He is hiding and peeping from behind the curtains! Look at him!…The sister was beaming with joy as she ran through the ward corridor to share the news. He was quick to capture the moment in a video on his mobile and the mother was in tears, this time, of happiness.
Countless tears had she shed on countless occasions as she had struggled to save her only living child. Four miscarriages, a child lost in infancy to an undiagnosed illness, a broken marriage, all alone in a foreign land with a child ill from birth……the strongest of humans would break in such a predicament, but not this lady. Not this lady, for she had the strength that comes from love. One of the biggest joys in life is to love and be loved. Sroy was the one to love her back and she would do all in her power to have him live.
She first come to India from Cambodia when Sroy was about a year and a half. He had biliary atresia. Sroy had a corrective surgery at 2 months of age at Singapore but his liver functions continued to deteriorate. He had repeated episodes of jaundice with fever and when he began to vomit blood, he was advised for an urgent liver transplant. Fortunately, funds were not an issue. The family chose to come to Delhi.
Sroy underwent a liver transplant and was discharged within 3 weeks. His liver functions improved rapidly and we sent home this little bundle of joy, his eyes sparkling with the hint of mischief, his laughter so infectious that the hospital gloom would be uplifted within seconds of being with him.
But the troubles he was born with didn’t go away with his liver. After remaining well for about 20 months, Sroy developed swelling all over his body and was detected to have kidney dysfunction. He was back with us, his blood pressure was high and is normally cheery nature was drowned in his restlessness.
Anxiety was writ large on the faces of the transplant team. Their worst fears were confirmed with the medical and kidney biopsy reports… Sroy had developed chronic renal disease due due to transplant associated thrombotic microangiopathy, a condition where the small blood vessels get occluded due to damage to their inner lining. This is a very rare but devastating complication of transplantation with mortality ranging from 60-90%.
Medications were changed, treatments instituted but to no avail. Sroy’s kidney function continued to deteriorate and soon he was on hemodialysis with no option but to undergo a renal transplant. One of his maternal uncles came forward to donate his kidney and the mother steeled herself to consent for his high risk surgery that fortunately, went off well. But Sroy’s troubles were far from over. He continued to have renal dysfunction and had multiple sessions of plasma exchange, intravenous steroids and high end novel therapies were instituted to save the new kidney. He picked up a urine infection, developed spiking high fevers requiring prolonged antibiotics. He was in the intensive care unit on his birthday, had fever when he cut the cake, yet was happy playing with the toy car his doctors had bought him. The injections, the monitors, the nurses had somehow integrated into his life and the pain couldn’t subdue his joyous spirit. That was what triumphed ultimately when his new kidney worked well, his complications controlled, he danced in his room, his pranks were back and so was the long lost smile on his mother’s face. He had won, a mother’s resilience had paid off and he went home after a 4 month long hospital stay, all hale and hearty.
The Clinical Perspective Thrombotic microangiopathy has been reported frequently after stem cell and bone marrow transplants but is exceedingly rare after liver transplantation. After one organ transplant, he needed another – a nightmare for any family and treating unit. He needed strategizing on multiple therapies to control the angiopathy and make the kidney transplant feasible and successful whilst also protecting the grafted liver. The situation was very challenging and we really feared losing Sroy. |
Consultant Pediatric Gastroenterologist & Hepatologist, Indraprastha Apollo Hospital
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