Boy, 5, waiting for kidneys

SINGAPORE - His plight so moved six readers, they wanted to donate not money but their kidneys to him. Alas, none matched the boy's O+ blood type.

Then, another 19 readers stepped forward. We'll do it, they pledged.

Even if my kidney's not a perfect match, I'll donate to others on the waiting list, some said.

It has been 16 months and Bryan Liu, five, the boy with no kidneys, is still waiting.

The New Paper first reported on the little boy's condition in June last year.

Bryan was born with only one small kidney, which failed when he was just two years old.

His mother, Madam Serene Ng, 37, a part-time administrative assistant, donated one of hers to him, but that failed too.

His father, Mr Victor Liu, 49, a manager in a telco, and his twin sister Charmaine, couldn't donate their kidneys to him as they have different blood types.

Bryan's plight obviously touched our readers.

Since our report, they have constantly written in to us for updates on the boy's condition.

And the news is that the poor boy is still waiting.

Operation

Two weeks ago, doctors operated on Bryan.

The exit tube for his peritoneal dialysis (PD) was infected. This form of dialysis makes use of the peritoneum (a membrane that lines the abdominal cavity) as a natural filter for the blood to be purified in the body.

It differs from haemodialysis, where blood is purified outside the body with an artificial kidney.

Bryan is now on haemodialysis because the doctors are still monitoring his condition before deciding if he can be put back on PD.

A day after the operation, the boy was back on his feet.

Though hunched over from the pain, he went around the ward visiting other patients, said Madam Ng.

"When he recognises the nurses, he'll wink at them. They always laugh and call him their 'boyfriend'," she said.

"He sees the hospital as his second home and the people there are his second family."

Although he was discharged the same week, Bryan has to return to hospital four times a week for haemodialysis.

"Hopefully, he can go back to PD soon. School is disrupted whenever he goes for haemodialysis now," Madam Ng said.

The boy is survives on dialysis, getting growth hormone injections and a cocktail of medication to keep his blood pressure under control.

His childhood

This is Bryan's childhood.

He doesn't know that anaemia, hypertension, stroke and even heart failure lurk just around the corner.

But his mother is all too aware of the danger.

She knows her son's heart walls are thickening, raising his blood pressure.

And she knows it could be a matter of time before his heart gives way.

Bryan is on the waiting list for a kidney - a wait which Madam Ng fears could take up to eight years due to the large number of patients on the waiting list.

Potential donors have to undergo a medical fitness evaluation and counselling, tests, psychiatric appraisal and an interview with the hospital's ethics committee to see if they can donate their kidney.

Despite showing interest to help, some people didn't turn up for the first evaluation, Madam Ng said.

That's why "I'm not hoping for a donor now".

When told that readers had asked after her son, she said softly: "I'm surprised people are concerned about him, but I'm not expecting much.

"It's not like donating money. When you donate a kidney, you can't get it back."

Madam Ng posts her fears and joys online.

The Facebook page 'A kidney for Bryan, a gift of life' has more than 600 likes.

There are photos of her boy at a school orientation - Bryan starts Primary 1 next year - along with updates, like the frustrating night his tube came loose: "It should not happen at all! But yet it did...on him!

"How much more he has to suffer, we wonder? Really felt helpless at times."

Every day, she sees reminders of his pain.

The six scars on his body - the longest scar stretches from his chest to his belly button - are the result of the kidney removal.

Then, there's his belly button, "distorted from so much dialysis", Madam Ng said.

A hole, the size of a five-cent coin, showed where the dialysis tube was inserted into the little boy's stomach.

Doctors had to stitch the hole shut after it failed to close on its own.

"Does it hurt?" this reporter asked Bryan, pointing to a scar on his tummy.

He shook his head. "No," he grinned, then ran off to the kitchen.

Battling the odds

Battling the odds

Madam Ng knows her son is a fighter.

Since he was six weeks old, he has been battling the odds.

The small kidney with abnormal tissues that Bryan was born with failed when he wastwo years old.

Five months later in May 2008, Madam Ng donated one of her kidneys to Bryan, making him Singapore's youngest kidney transplant patient.

But that failed too, because of a rare condition caused by a virus,and was removed.

At 1.04m tall, Bryan's growth is stunted.

He is shorter than many of his peers. His twin sister Charmaine is 1.1m tall.

When Bryan runs, his legs bend out. He doesn't swim for fear of infection.

He doesn't feel thirsty and drinks just 300ml of water daily.

He takes milk powder for babies as it is lower in potassium.

An excessive level of potassium in his blood could result in heart failure.

He ate at fast-food restaurant McDonald's for the first time this year, on the eve of Chinese New Year.

His favourite food there? Chicken nuggets.

The bubbly boy is happiest at the playground, climbing up and down, spinning on the swings.

As his laughter filled the air, Madam Ng said: "Look at him, he doesn't seem like a kidney patient at all."

When contacted, Professor Yap Hui Kim, head of the Paediatric Nephrology, Dialysis and Renal Transplantation division at the National University Hospital, said she believes Bryan can "lead a normal life, with proper dialysis".

Still, Madam Ng would rather not think of the future: "I never think so far. I don't dare to think.

"If his time comes, I will be okay with it," she added, staring straight ahead.

Clenching her jaw, she said: "I will be okay."

This article was first published in The New Paper.

Purchase this article for republication.

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