Just 6 months old and the battle begins against biliary atresia
Her eyes light up every time he walks into the room and she murmurs and gurgles wanting him to pick her up and hold her close. The father-daughter bond is very strong, although Methnadi Uthkarsha is just six months old. For any other father, a life of joy would be ahead, but a cold fear grips 33-year-old V.D.A. Namal Nishantha. Every waking minute he worries whether Methnadi would live even to be three or four, let alone a teenager.
In urgent need of help: Baby Methnadi. Pix by Amila Gamage
There is no peace for him even in his sleep and he wakes up in a cold sweat, worrying whether he would be able to collect the almost impossible Rs. 7 million he needs to make her well. Methnadi is suffering from biliary atresia and needs an urgent liver transplant. Although in Sri Lanka surgeons have ventured into adult liver transplants, those needing paediatric transplants have to go to India. (See box)
When Namal who works in a private mini-hydro power plant married Chandra Shanthi Kumari, 30, a montessori teacher, two years ago and began a new life, things looked good. Living at Bulathgama in Balangoda, the routine of working and looking after their home took over. There was excitement and expectation in their mundane lives when Methnadi was born on December 5, 2012. Although Kumari had a long labour lasting about five hours, the birth was normal and the newborn’s weight good.
Indications that everything was not alright came when there was no weight-gain after a month and the midwife advised Kumari to keep an eye on the feeding. By that time the adoring parents also noticed that Methnadi’s eyes were tinged with yellow while the stools she passed were pale-coloured.
The hospital visits began, with doctors suspecting that she may be having a vitamin deficiency and blood tests followed. Advised to return for more tests after giving Methnadi the vitamins, there was sorrow when those tests showed no changes. Brought to Colombo by the anxious parents, a Paediatrician they had channelled had suspected that Methnadi may have caught a virus but on seeing a blood report a month later had advised them to seek an answer about their baby’s condition from the Lady Ridgeway Hospital (LRH) for Children. “They will do all the tests to check what’s wrong,” he had said.
At LRH, the doctors had come to the conclusion that it was biliary atresia and also attempted to perform the Kasai procedure, as a temporary measure but Methnadi’s liver had cirrhosis and the LRH team had to close up when there was heavy bleeding, Namal tells the Sunday Times.
Now, Namal is running around in a desperate attempt to beat the clock and raise the Rs. 7 million he and Kumari need to save Methnadi’s life.
He is determined to sell the land on which their home is and has already pleaded for Rs. 300,000 from the President’s Fund.
Life has come to a standstill for this humble family. “Godak asarana wela inne,” says Namal explaining that they are in dire straits.
Yes, Methnadi looks a lot like me, he adds, while the sorrow and despair in his eyes give out a heartrending message.
Save our little girl
Please help us save our little girl, is the plea of Namal and Kumari. Kind people who wish to make a donation could send it to Account No. 017-200 3600 244 96 at the People’s Bank, Balangoda branch in the name of father, W.A.D.A.N. Nishantha. Anyone who wishes to contact him could please call: 0777140212
What is Biliary atresia?
Biliary atresia is a killer.
Babies suffering from biliary atresia are born with the flow of bile from the liver to the small intestine being blocked as the tubes or ducts carrying the bile are not developed. Bile has the salts that help in the digestion of food in the small intestine. This would result in damage to the liver, that vital organ of the digestive system, followed by cirrhosis (scarring) of the liver.
When a baby suffers from this condition, they have jaundice (turning yellow), dark urine, a swollen spleen and pale or light coloured stools. They either gain no weight or do so very slowly.
The Sunday Times learns that the LRH performs the Kasai procedure to connect the liver to the small intestine, bypassing the undeveloped bile ducts. However, the long-term answer is a liver transplant.
Follow @timesonlinelk
comments powered by Disqus