The fight of her life

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The fight of her life
For this former Sutra dancer, uncertainty over whether her son would survive turned into a determination for him to thrive – and to be there for other parents in crisis.
The Star/ Asia News Network

When Nishah Govind Kumar's son was just a couple of weeks old, doctors diagnosed him with Short Bowel Syndrome (SBS) - and told her to prepare for the worst.

Jai Dev is now 14 months.

After she got married in 2012, Nishah suffered two miscarriages.

"When I got pregnant for the third time with Jai, I was too afraid to tell anyone until the 20th week scan was clear," said Nishah, 33.

In her 25th week of pregnancy, her blood pressure rocketed dangerously, and she was diagnosed with pre-eclampsia.

Read also: Possible gene for miscarriage found: Study

In her 32nd week, doctors advised an emergency C-section.

Born at just 1.19kg, Jai was placed in NICU (neo-natal intensive care unit).

"On the 10th day, we got a call. Jai's stomach was distended, his heart rate was elevated and they needed to operate to find out why.

"The doctors said Jai had mid-gut volvulus, a malrotation of the gut - very rare in a premature baby," she said.

Where other babies his size had between 160cm and 240cm of small intestine, Jai had only 8cm after his fourth surgery.

Read also: US mum to give birth to baby without brain to donate organs

Malnutrition was a constant threat because any food would pass straight through him. He required nutrition via an IV.

Nishah and Jai moved into an isolation room in Hospital Kuala Lumpur for seven months.

"Whenever Jai went to sleep, I would sit in a corner and cry," said Nishah.

"One day, as I was crying outside, an old Malay man sat next to me.

"He said, 'God knows what's best for you. It may not necessarily be what you want right now, but it will be what you need'.

Read also: Neonatal: Nearly 1 in 10 babies here born prematurely

"He said redha (accept sincerely) to let it go. That really calmed me."

Nishah quit her job to take care of Jai for a year.

By sharing their journey on Instagram, she connected with other families from all over the world dealing with similar issues.

"The best bowel adaptation facilities are in the United States, in Boston, and I connected with people there," she said.

"There are many families here who don't speak English so I bridge the gap and translate their questions and the answers."

Nishah also learnt about Total Parenteral Nutrition (TPN), complete IV nutrition via a central venous catheter - and doctors were confident that Jai could be brought home.

"Each TPN bag costs between RM200(S$63) and RM500 daily. In Malaysia, it is government-subsidised," she said.

Bringing Jai home meant creating a completely sterile room.

Nishah gained hope and strength from many people. Her husband and immediate family were a loving bedrock.

"My husband saw Jai's beauty, even when I got caught up in his illness," she said.

"A mother from the US sent me a photo of her 16-year-old son to let me know there is hope," she said.

"I think finding this strength also had a lot to do with the discipline instilled in me when dancing," said Nishah, who started when she was five and spent 12 years of her adult life performing Odissi with the Sutra Dance Theatre.

"When you are on stage, you cannot just decide to stop dancing because you don't feel like it. So, you learn perseverance."

Nishah returned to work as a client relationship manager in January. A home nurse looks after Jai during the day.

"My husband and I manage the line care and TPN feeding, which takes 16 hours every day," she said.

She continues to share her family's lives on Instagram @nishahgovindkumar, where she has almost 3,500 followers.

Jai is a cheeky, active child now. "He thinks the IV stand is his friend, it's like his security blanket!

"I didn't know I could love another human the way I love this child. He is moving mountains.

"SBS is a lifelong condition, and I'm going to fight for Jai all the way."

 

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