Without transplant, this baby will die

Without transplant, this baby will die

Holding a milk bottle snugly in her tiny hands as she sleeps, little Auni looks like any normal baby.

She's not. A closer look will reveal that she has jaundice. Which is normal among newborns, as it usually clears without treatment.

But little Auni is eight months old. And she's very sick.

"My baby needs a new liver. Otherwise, she won't survive. The doctors who treated her gave her about a period of less than a year to live," said Madam Suriani Senin, trying hard to hold back tears.

Auni, whose full name is Auni Syahira Mohamed Rossly, needs a living and willing donor aged 21 to 55 years old, from the O-positive blood group, said Madam Suriani, 31.

She and her husband, 35, can't donate because they both have B-positive blood. Auni is O-positive.

Auni was diagnosed with biliary atresia when she was three months old. Infants with this condition are born without bile ducts. The condition is rare - it affects one in 14,000 newborns.

When The New Paper visited Auni at KK Women's and Children's Hospital (KKH) on Wednesday, she was fast asleep.

Said Madam Suriani, a childcare teacher:"During the first month, medical checks at Tampines Polyclinic did not reveal anything, so I thought things were normal."

But on April 4, when Auni went for her third-month vaccination, the doctor noticed her prolonged jaundice. Her stomach was also bloated.

"She was sent to KKH on the same day for further checks, and was admitted on that day itself," said Madam Suriani.

The next day, Auni underwent checks and ultrasound scans which detected an obstruction on her bile duct.

 

Madam Suriani said she was devastated when her daughter was diagnosed with biliary atresia. She also started blaming herself.

"I told myself that I'm the reason my daughter is suffering. I thought it must have been my high stress levels and what I've been eating.

"But I realised I had to fight that feeling and do something to help her," she said.

So when the doctors suggested that Auni undergo immediate surgery, Madam Suriani agreed.

On April 12, Auni underwent a procedure known as the Kasai operation, in which a duct is constructed using a part of the intestine to drain bile from the liver into the intestines.

Madam Suriani, who also has two sons, one aged four years old and another 22 months old, recalled: "I felt really broken sitting outside the operating theatre for hours. I was afraid she would die. I felt so scared."

Eight hours later, the doctors emerged with good news - the operation was a success.

After the operation, Auni received treatment at KKH for two weeks in the high dependency ward. She was only allowed to return home after almost a month in the hospital.

Since then, Auni had been receiving medical attention at home and was taken to KKH for regular checkups. But her condition worsened as months went by.

Said Madam Suriani: "From May to August, Auni's condition deteriorated. Now, her liver is more or less not working anymore. "

Auni's grandmother, Zalehar Yusope, 62,said that caring for her can be tough.

Madam Zalehar, who has since January helped take care of Auni regularly in her condominium in Johor Baru, said: "She'll get up more than the average baby at night to urinate. After drinking a bottle of milk, she'll urinate two to three times in an hour."

Auni now weighs 7kg at eight months. (Normal babies are between 8 and 9kg.)

Doctors said she needs to be at least 8 to 9kg before a liver transplant can take place, said Madam Suriani.

Madam Suriani said she has been trying hard to juggle her job and take care of her children.

She and her technician husband earn about $3,300 a month.

They spend about $320 to $400 on nutritional supplements each month that Auni is taking for infants who require extra calories, minerals, and vitamins because of brittle bones.

 

Her medical bills total up to almost $280 per month.

But the expenses are nothing compared to the anxiety as she waits for help from a stranger.

"Without the transplant, I don't know how long more my baby can live."

What her doctors say

Doctors of the Gastroenterology Service of KKH said: "Auni has been under the care of KKH for a severe living condition and she will need a liver transplant soon.

"Preparations had been made for her to undergo liver transplant at National University Hospital, the designated centre for paediatric liver transplant.

"Our doctors and healthcare professionals have been working closely to provide support to Auni's family."

"My baby needs a new liver. Otherwise, she won't survive. The doctors who treated her gave her about a period of less than a year to live."

mdnajib@sph.com.sg

This article was first published in The New Paper.

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