September 19,2024

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A brave story unfolds- the story of Nirav Bhortakke, a 6 years old boy from Yelewadi, Maharashtra

Meet Nirav, a 6-year-old boy who faced liver disease called Progressive Familial Intrahepatic Cholestasis Type-II. It is a rare liver disorder caused by a gene mutation that affects bile transportation leading to a buildup of bile in the liver, causing issues like jaundice and liver damage. It usually appears in early childhood and early detection is crucial for better outcomes.

Nirav had this illness from childhood, his body turned yellow from birth and his hemoglobin level was low. For a few days after his birth, the parents thought it was normal; but even after 8 to 10 days of birth,Nirav’s body remained yellow. Now his parents got concerned and took him to a local doctor for checkup but nothing could be diagnosed. The doctor administered him blood because his hemoglobin was low. Whenever Nirav’s health deteriorated, his father took him to the hospital and the doctor administered him blood.  After couple of such visits, the doctor suggested Nirav’s father; FannindraBhortakke to get him checked in Pune rather than in the maternal mother village. They sought a second opinion in Pune, and then they learned that Nirav had a liver problem and he needs a liver transplant.

Later, when Nirav’s parents had their second baby, they took the child for a check up to ensure that nothing was wrong in their second baby. The doctor informed them of a 25 percent chance of a similar issue. At the time, Nirav was also examined and after checking, the doctor suspected a hole in Nirav’s liver vein. Subsequent tests did not reveal anything, but further testing indicated a liver problem, requiring a liver transplant, as he couldn’t recover otherwise.

Upon hearing that Nirav had a serious illness requiring a liver transplant, his family took some time. Later, they learned about Sahyadri Hospital which is in Pune, where similar cases had undergone successful liver transplant. They decided to have Nirav checked at Sahyadri Hospital, Pune. Dr.BipinVibhute, a surgical expert who had handled such cases, exminedNirav. After the tests, it was confirmed that Nirav had Progressive Familial Intrahepatic Cholestasis Type II (PFIC Type II).

Dr. Bipin Vibhute explained Nirav’s condition to his family and conveyed that a liver transplant was Nirav’sonly hope for survival. For Nirav’s father, this situation was very challenging as they lacked funds, and if the transplant wasn’t successful, they might lose their child. They were unsure about what was to be done. Dr. Bipin gave them some time to think as ultimately, the family’s decision would be the final one.

After speaking with Dr. Bipin Vibhute, Nirav’s father went outside and met another patient and their family. The patient name was Yuvraj. From Yuvraj’s family, Nirav’s father learned about Yuvraj case. Yuvraj and Nirav had quite similar cases, and Yuvraj liver transplant had been successful. This gave Nirav’s father a hope that Nirav could also recover and live a normal life like other children. They decided to go ahead with Nirav’s liver transplant, but financial concerns were another problem worry for Nirav’s father as he is sole earner in the family.

Sahyadri Hospital supported them during this time, and with the help of their social worker, they reached out to foundations and trusts, requesting funds.

When TPAF got to know about Nirav’s case, TPAF gathered details and documents related to the case and transferred funds for Nirav’s transplant. This support eased the financial burden on Nirav’s family, allowing them to focus on the transplant without additional mental pressure.

Nirav finally underwent a lifesaving liver transplant on 16^th June 2021 with the assistance of TPAF and other foundations, and the operation was successful.

Nirav’s family finally breathed a sigh of relief upon hearing that their child’s transplant was successful. They expressed their gratitude to the doctors, TPAF and other foundations who helped them throughout the process.

Nirav is doing well. Now, Nirav engages in all the activities that a normal child does. Post-transplant, Nirav’s family paid full attention to his diet and medication. However, he experienced occasional fever and his family took him to nearby doctor for a checkup. This isn’t ideal because Nirav had undergone a liver transplant, requiring careful monitoring of his health post-transplant. If any doctor unaware of his past history prescribes him medications, it could have a negative impact on his health. But now, his health has improved.

In the journey of overcoming a life threatening liver condition, Nirav’s story unfolds as a testament to resilience and unwavering spirits of TPAF and other foundations. The successful liver transplant has not only given Nirav a chance at a normal childhood but has also highlighted the importance of post-transplant care. As he joyfully embraces everyday activities, Nirav’s story serves as an inspiration, showcasing the transformative power of hope, medical expertise, and the support of TPAF and other foundations.