She Might Have Lived If Only...

By Lee Hui Chieh

January 6, 2004

For Madam Mazeda Hashim, the proposed amendments to the Human Organ Transplant Act (Hota) have come too late.

Her four-year-old daughter, Nur Ain Nabilah Ariffin, died last October, after waiting 31 months for a donor liver that never came.

Said Madam Mazeda, 33, a cashier at a petrol station: 'It should have been done a long time ago, not now. If it had been done earlier, maybe Ain could have been helped.

'Still, it's good they are doing it now for other children, other parents. I don't want them to feel sad like me.'

Her third and youngest child was mentioned by the Acting Minister for Health Khaw Boon Wan in Parliament yesterday during the Second Reading of the Hota (Amendment) Bill, which would allow, among other things, for the liver, heart and cornea to be donated for human transplant.

Around 15 people die every year while waiting for a liver transplant, Mr Khaw added.

Nur Ain was born with biliary atresia, a rare condition in which the bile ducts are obstructed and eventually cause liver failure.

Her mother could not donate her liver as she was found to be suffering from diabetes. Neither could her father, Mr Ariffin Moani, a 34-year-old surveyor, as his blood type was different from hers.

Six different types of medication to prevent infection and help her liver function worked well for about two years, but at the beginning of last year, she succumbed to infection. She was in and out of hospital two or three times every month.

Her parents took turns to take care of her round the clock. Madam Mazeda's mother helped to take care of their two other daughters, aged 8 and 12.

Madam Mazeda said: 'I was just praying very hard every day, waiting day after day for someone to donate, but no one gave to her.'

One day last October, Nur Ain became very breathless and fainted. Doctors revived her momentarily. 'She looked at me but she couldn't speak and was turning blue. I hugged her and she hugged me back very hard, a very long hug. That was our last hug,' said Madam Mazeda.

The little girl fell into a coma and was pronounced brain dead the next morning. Her parents then made the difficult decision to switch off her life-support machine about two hours later.

Mr Ariffin said: 'Now that she's gone, there is an emptiness inside me... From our experience, it's better if just anyone can donate, no matter whether they are related or not. As long as they are willing to help out, it would be good.'

Copyright © 2003 Singapore Press Holdings.

This article posted January 31, 2004.