PETALING JAYA: In April last year, Evelyn Mary Alex Santhana was diagnosed with biliary atresia, a condition which blocks the tubes that carry bile from the liver to the gallbladder. She was only two months old back then.
Her mother, Ilavarsee Muniandy, 33, said Evelyn had jaundice when she was born at Kajang Hospital. In addition, the umbilical cord was wrapped around her neck, which partially choked her.
“Evelyn was placed in the hospital’s neonatal intensive care unit for several days to stabilise her breathing,” said Ilavarsee, adding that her daughter had to be under a “bili light”, which is a type of light therapy that is used to treat newborn babies with jaundice.
Days later, Evelyn was discharged but while being nursed at home, she continued to suffer from jaundice and was taken to a nearby government clinic for further treatment. However, she continued to suffer from it.
“Her blood was drawn to check the jaundice level at the clinic, but nothing came of it. We were finally told to get Evelyn to Kajang Hospital for treatment. She had undergone an ultrasound scan to see if there were blockages in her liver. None could be seen,” Ilavarsee told theSun.
Evelyn was then referred to Kuala Lumpur Hospital (HKL) for two more rounds of ultrasound scans. Luckily, she did not experience any fever or lack of appetite.
It was only during Evelyn’s third ultrasound session at HKL that they discovered she had biliary atresia.
“We were told that Evelyn needed to undergo a procedure called Kasai, which would take five and a half hours,” Ilavarsee said.
Evelyn underwent surgery on July 7, not long before she turned three months old.
“We were told that the procedure was a temporary measure to stop the jaundice and that it had to be done before she was three months old. There was also a chance that her liver might fail after undergoing the surgery.”
Soon, Ilavarsee noticed that Evelyn’s stool had turned to a watery yellow colour. She brought the sample to HKL where blood tests were carried out. The results led doctors to believe that the Kasai treatment “might have failed”.
Evelyn was put on medication and her jaundice came back as well. Finally, her parents were told that Evelyn would need a liver transplant.
She was put on a waiting list until a suitable donor was found.
Ilavarsee and her husband Alex Santhana were deemed unsuitable donors, as Evelyn’s blood type was O-positive while Ilavarsee’s was A-positive and Alex’s B-positive.
Evelyn also needed to increase her weight from 5kg to 10kg to undergo the transplant.
At that point, Ilavarsee got in touch with the Biliary Atresia Malaysia Association.
She was told that despite the blood type difference, she could still be a donor but the procedure had to be done in a hospital in New Delhi, India.
After speaking to doctors, Ilavarsee had Evelyn transferred to the University Malaya Medical Centre, where she is now being tube-fed with a special baby formula.
Ilavarsee is a housewife while Alex is the family’s sole income earner and works as a lorry driver, earning a monthly salary of RM2,000.
The couple have sought the help of Father Bonaventure Rayappan of the Church of the Holy Family Kajang.
He has since organised a fundraiser for Evelyn’s trips and medical expenses.
The child needs RM300,000 for her transplant in India, which is scheduled to be held in February.
As of 9am yesterday, donations have exceeded the target, with RM315,997.58 raised.
The surplus funds after deducting local and foreign medical expenses for Evelyn’s treatment would be transferred to the next child suffering from biliary atresia and requiring a similar procedure.
“We wish to express our heartfelt gratitude and appreciation to all donors for your generous support. What seemed like an impossible dream to save our child’s life has been realised with your assistance. This is the spirit of ‘Malaysia Boleh’ at its best and we can’t be more overjoyed,” Ilavarsee said.