Special birthday treat for 3-year-old on ventilation

KOLKATA: It was a surprise birthday party for little Saheli Tiwari, who turned three on Thursday. Only the ones who threw the party were an uncommon lot. They were the doctors and nurses at the paediatric intensive care unit (PICU) of AMRI Hospitals, Mukundapur, where the child has been admitted since August 24, 2017.

“Saheli has become a part of the PICU family. We could not have ignored her birthday,” said neurosurgeon Dr Sisir Das.

Saheli suffers from multiple neurofibromatosis, a genetic disorder that causes tumours to form on nerve tissues. Though her brain function has been normal, doctors have not been able to send the child home as she can’t breathe without ventilation support. Multiple tumours have compressed her nerves and muscles, including the respiratory ones. “Multiple tumours are arising from her spinal cord. We operated on her the very next day of her admission but could not remove all the tumours as it could have been fatal,” said Das, who operated on Saheli. She was put on ventilation right after the surgery. Now, the remaining tumours are getting bigger and she cannot breathe on her own. “She is completely dependent on ventilation support,” said Dr Soumen Meur, paediatric intensivist.

The doctors and nurses wanted to make it special on her birthday. The entry of the unit was decked with flowers and balloons. “She loves lipstick and bindi. So we put make-up on her and dressed her in new clothes,” said Sonia T, a nurse. The child broke into a smile when a cake was brought to her bed. She cut it with the help of a nurse and her mother fed her a slice. “In the West, patients like Saheli are put on ventilation at home. But the child’s parents cannot afford a system, so we cannot discharge her,” said Dr Bichitrabhanu Sarkar, paediatric intensivist.

Her father Santosh, a jute mill worker at Howrah’s Bauria, took her to six hospitals before coming to AMRI Mukundapur. “Everywhere, doctors said my child would die if they performed a surgery,” said Rinu, Saheli’s mother. AMRI will continue to support the child as long as her parents wished to. “Lack of home ventilation for kids with normal brain function is a concern,” said Prabhas Prasun Giri, PICU in-charge at Institute of Child Health.