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Little Nur's only hope is a new heart

Girl, 4, has only 'weeks to live' unless she gets a heart transplant. Desperate parents forced to look overseas as no such programme here. -TNP
Daryl Yam

Fri, May 25, 2012
The New Paper

When The New Paper visited Madam Norleen Osman's one-room flat in Ang Mo Kio a week ago, the child sleeping in the middle of the room started to cry.

When Madam Norleen, 33, propped up the little girl on her lap for the interview, she would not stop screaming.

The housewife felt the need to apologise on her only daughter's behalf. She and her 28-year-old husband also have three sons, aged 16, 14 and one.

"I'm sorry," she said. "She's on morphine right now. She's very cranky."

Four-year-old Adlea Ry'Kyla Muhammad Ghazali, known affectionately by her loved ones as Nur, was diagnosed with myocarditis in 2010, when she was admitted into KK Women's and Children's Hospital (KKH) for vomiting blood.

Myocarditis, simply put, is an inflammation of the heart, commonly caused by a viral infection. (See report on facing page.)

Nur was just a year and seven months old then.

Now, only "six per cent" of her heart is still functioning.

The stark truth facing her parents: Unless Nur gets a new heart soon, she will die.

Said Madam Norleen: "The doctors aren't even talking about years or months. They're talking about weeks."

Nur's only hope is a heart transplant in a country where paediatric heart transplants are not available.

Associate professor Wong Keng Yean, senior consultant of KKH's cardiology service in the department of paediatric subspecialties, told TNP that there is currently "no heart transplant programme for children as young as Nur available in Singapore".

Complications

To complicate matters, her heart inflammation has caused her kidneys to deteriorate, which in turn has caused her abdomen to bloat until her tummy is now twice its normal size.

When Madam Norleen tried to help us photograph Nur's bare stomach, the little girl objected tearfully.

She was so distressed by her condition that she kept pushing her dress down to conceal the tube underneath that is attached to the side of her body.

Every morning and evening, Madam Norleen would remove the plaster around the tube, unscrew the tube and then insert a syringe to drain out the yellow fluid collected in Nur's stomach.

The little girl's bloated stomach, pressed against her other organs, also causes her to suffer from breathlessness, severe pain and a regular fever.

As if this was not enough suffering, she also has a wound on her right foot, the result of a doctor's attempt to attach a drip.

The wound, which became infected, oozes pus.

Nur is now on a daily cocktail of diuretics, morphine and heart medication, and a diet of rice and soup with as little salt as possible.

Said Madam Norleen: "Anything she eats, she will throw up. But she likes chilli a lot and curry too.

"When she was hospitalised at KKH, the nurses even had to add a little curry to her food as a special order."

As Madam Norleen gave Nur a container with a small amount of tomato ketchup, the little girl stopped crying.

"Look at her," her mother said. "She can't resist anything red."

Nur dipped her index finger into the container and licked the ketchup on it.

But soon after, she began protesting again, prompting Madam Norleen to place a container underneath Nur's chin.

Making a few heaving noises, Nur threw up some orange fluid.

During our hour-long interview, she threw up two more times - and all she had had was the ketchup. With Nur's condition deteriorating rapidly, Madam Norleen's is becoming more desperate for a heart transplant to save her daughter.

She and her husband have sent applications to various hospitals overseas.

They received their first reply on May 6 from the Royal Children's Hospital (RCH) in Melbourne, Australia.

The hospital acknowledged receipt of their application and asked for Nur's scans and medical reports to be sent to them.

They also gave a quotation of A$85,000 (S$107,000) for the expected cost of the heart transplant surgery and treatment at the hospital.

Madam Norleen, whose husband earns $2,200 a month working as a security officer, was worried about how they would raise the money.

But bad news followed when she received an e-mail from RCH last Friday telling her that the hospital is "unable to offer heart transplantation to overseas patients".

The next day, Nur - who had been suffering from breathlessness, jaundice and vomiting - had to be re-admitted into KKH and was warded over the weekend.

Her foot infection has also worsened.

Prof Wong explained that it is "very difficult to set up drips for patients such as Nur due to the severe swelling from heart failure and limited drip access sites".

Dr Arjandas Mahadev, head and senior consultant of KKH's department of orthopaedic surgery, said: "This infection is a known risk when setting an intravenous line, and may spread in situations of general poor health and immunity."

Last Monday, Nur underwent a two-hour procedure to excise the infected tissue on her foot. She is now warded in the hospital's intensive care unit.

But an e-mail from the Boston Children's Hospital in the US acknowledging receipt of Nur's scans and medical reports has given Madam Norleen another glimmer of hope.

"I just hope she stays strong," she said.

"She's a fighter, I can see."

This article was first published in The New Paper.

 
 
 
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