A HEALTHY child is what all parents wish for.
When a child is born with a condition that endangers his life, the journey and struggle to seek treatment can be overwhelming.
But with any disease, early detection offers more options in terms of treatment and better survival rates and it's no different for children born with Biliary Atresia (BA).
These children are born with a defective bile duct system and this starts causing damage to the liver.
Seven in ten babies born with defective livers will die because of the lack of facilities to treat them.
However, more crucially, many of these children are not diagnosed early as their parents assume that the infants are merely suffering from jaundice, which is common among newborns.
By the time they seek treatment, their condition would have escalated to a severe stage, where a liver transplant is the only option.
Biliary Atresia Malaysia Association (BAMA) president Mudzaffar Shah Ali says BA is a rare disease, with only 1` in 20,000 people worldwide having it.
In Malaysia, there are between 10-20 cases diagnosed each year but Mudzaffar says there could be many more going undiagnosed.
"There may be parents who do not know that their children have it and these children eventually die without any treatment, especially in rural areas," he says.
BAMA was established in 2014 with the aim to create awareness among parents about the condition.
Mudzaffar said BAMA has assisted parents of afflicted children and adults to seek treatment both locally and abroad and the more recent cases involved three babies who went for treatment at the New Delhi-based Apollo Hospital in India.
The youngest child operated on was only three and a half months old.
The liver is the only organ that can regenerate after being transplanted, explains Indraprastha Apollo Hospitals senior consultant liver transplant, Dr Neerav Goyal.
"The liver can regenerate to 80 per cent after three weeks and over 90 per cent within a year. Thus, after a child's liver transplant, a very long, high-quality life is to be expected," he says.
Paediatric liver transplant patients generally have a very good quality of life after their transplant but they would need to be on immunosuppressant medications all their lives but at a reduced dose with each passing year.
Dr Neerav adds that lack of awareness among the general population and also among doctors themselves who may initially diagnose the condition as physiological jaundice, adds to the problem.
There is a simple way for parents of newborns to detect the condition and it's by observing their baby's stool colour he explains.
Children born with BA will have clear, whitish coloured stools as opposed to brown.
Many countries now provide a stool colour chart for new parents so they can observe their infant's stool.
At any sign of a problem, they can get in touch with their doctors for further evaluation.
It's a simple and effective method of early detection for a disease that can have a devastating impact on a child's life if left untreated.