Verified By Dr Smita Malhotra August 23, 2023
1443True to her name, Apoorva, is her story. Apoorva, that has never been seen before, that is unprecedented, never heard of.
Lord Krishna is fondly called “Yashoda’s Nand Lal” because the mother who brought him up is revered as a greater life force than his biological mother. Apoorva also had 2 sets of parents – the ones who gave birth to her and the one’s who adopted her. She was adopted within her parents family by their elder brother and his wife who could not beget a child of their own. She was everyone’s darling, doted on by one and all.
Just as the joy of her existence was manifold, so was the pain of her suffering. The entire family was in gloom when she was diagnosed with Budd Chiari Syndrome, a condition caused by occlusion of the veins of the liver, in the first year of her life. She had developed fluid collection in her abdomen and an ultrasound showed blockages in the hepatic veins. This would lead to chronic liver disease and she was put on regular medications. True to its nature, the disease progressed and by 4 years of age she had developed cirrhosis and its many complications. There was increased pressure in the veins supplying the liver leading to fluid accumulation in her belly and increased risk of bleeding. She had developed hepatopulmonary syndrome (lung dysfunction secondary to liver disease leading to shortness of breath and breathing difficulty more so in the sitting position). She had become blue and oxygen dependent. Liver transplantation was the only cure.
It is said that the strength of parenthood can even defeat nature. Why wouldn’t her disease be defeated when she had 2 sets of parents ready to donate their livers for her? But here lay nature’s irony. While most transplanted children receive livers from either of their parents, Apoorva was like a thirsty person in a sea of salty water. Her biological mother was in an advanced stage of pregnancy and the other three were all rejected as donors due to medical reasons. There was no donor for Apoorva.
A cousin of her parents came forward. He was a young lad who had lost his father as a child. His mother showed exemplary courage and magnanimity by keeping familial bonds and humanity above the instinct for self preservation.
Apoorva’s transplant went off well. For a few days, all seemed blissful till disaster stuck. She had a genetic condition that gave her blood an enhanced tendency to clot and necessitated medication to keep it thin. Its’ a double edged sword, too thin blood could cause internal bleeding. She had just received one dose but in the backdrop of intermittent blood pressure fluctuations post surgery, she developed a massive brain haemorrhage.
Apoorva was immediately operated upon and the clot in her brain removed. Gradually, she improved and the half body paralysis that had occurred showed rapid recovery. The immensely worried team began to relax as she showed progress. She became extra special and everyone wanted to chat her up. But lo and behold, not a word was forthcoming! She would make eye contact, acknowledge with minimal gestures but was completely silent and withdrawn. Days passed, her physical recovery was almost complete. She was ready to go home but her voice was not to be heard. Her team feared she had developed aphasia which is loss of speech due to her brain injury but the neurologist disagreed. “The hospital environment has shut her up”, he said. After repeat CT scans of her brain were reassuring, she was discharged.
To our utmost joy, she came to the outpatients for follow up visits walking well, talking even better. She was the normal chatterbox her parents had known, making one demand after another, now music to their ears. She was indeed one of a kind, Apoorva!
The Clinical Perspective Brain haemorrhage is a devastating complication to have after any surgery. The liver surgery had been successful, but to send home a child cured of liver disease but paralysed is a predicament no team can allow. There was no plausible explanation as to what precipitated it. A single dose of antiplatelet drugs should not cause it, nor should mild intermittent hypertension. Her phase of aphasia made us feel helpless, are we so intimidating to the patient? Her full recovery brought immense relief. |
Consultant Pediatric Gastroenterologist & Hepatologist, Indraprastha Apollo Hospital
December 23, 2023
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