Boy with rare kidney disorder can have normal life after getting transplant

When Hazrie Alisman Norahman was a toddler, he was so swollen from water retention that his eyes narrowed to slits and it hurt him to be picked up (Inset). Now, Hazrie can look forward to a normal life following his kidney transplant last month.

At one point, his son's body was so swollen with fluid that the two-year-old cried in pain all the time.

"His body was so badly swollen and it hurt to be touched," explained the boy's father, Mr Norahman Abu Bakar, 36, who works in the logistics industry.

Hazrie Alisman Norahman, now seven, had nephrotic syndrome, a disorder where the kidneys cannot process protein and it leaks into the urine.

This causes a host of complications, such as swelling. 

"The doctors couldn't drain the water out of his body. He was only 12kg, but he gained another 5kg - almost half of his body weight - in water."

The boy's cheeks were so swollen that his eyes were almost slits.

And even though the toddler would be crying in pain, it would hurt the young child even more to be picked up.

The heart-rending situation got to Mr Norahman, he admitted: "I thought to myself, 'If he has to go, I would accept that'.''

"It would have been better for him to be dead than to be in so much pain."

The young boy was diagnosed with the disease after his father changed his diapers one day and noticed an abnormally large scrotum.

After a battery of tests were done, doctors delivered the shocking diagnosis.

Mr Norahman said: "Initially, I was told it could be cured and I had never heard of the disease before, so I wasn't freaked out."

But within 24 months of the diagnosis, when Hazrie was four, his kidneys started to fail.

Mr Norahman, who is divorced, quit his job, which required him to travel.

He instead took on contract work that would give him flexible hours.

Hazrie was fitted with a peritoneal dialysis device, where a tube is affixed via surgery to the abdomen.

Cleaning fluid is passed through this catheter and waste is flushed out eventually.

The treatment would take 10 hours each day.

Mr Norahman devoted himself to his son, getting training to administer the liquid and ensuring he was there to comfort his child.

"But Hazrie understood his condition quite well for a boy his age. He endured the pain and took his medication without complaining. He's a strong kid," he said.

Hazrie needed a kidney transplant, but in Singapore, paediatric patients wait an average of five to six years.

RARE CHANCE

Dr Ng Kar Hui, consultant, Division of Paediatric Nephrology at the National University Hospital (NUH), told The New Paper that children generally do not get priority on the waiting list except in very rare circumstances.

Mr Norahman said: "I was mentally prepared for Hazrie to be on dialysis for years and I was going to try my best."

Last month, Mr Norahman received a call that changed their lives. There was a compatible kidney for his son.

"I was excited and nervous to hear that there was a kidney donor for him. My whole body was shaking," he said.

But after the doctors explained the risks involved, he was left unsure.

If Hazrie's body rejected the new kidney, the boy would be on dialysis for the rest of his life.

Mr Norahman said: "I was scared he would not make it. But I had to think of him. This is his chance to get better and lead a normal life."

On April 20, Hazrie underwent a kidney transplant.

Hazrie is still in the Intensive Care Unit (ICU) at NUH undergoing plasma exchange therapy to quash any chance of a recurrence, but is recovering well, according to Dr Ng.

For now, specialists and dietitians are also helping Hazrie as the boy's growth has been stunted - his condition meant that he did not eat very much.

When asked, Mr Norahman said he spent more than $60,000 on treatment on his son, but he is thankful that the boy is on the mend.

Dr Ng revealed that Hazrie was keen to swim and play football soon.

Mr Norahman said with a smile: "Every weekend, he would want to follow me to play football, but because of the water retention, he could not run or walk properly and I always had to tell him no.

"But now, I am looking forward to passing my football passion to my son."

Nephrotic syndrome: Causes and symptoms

Nephrotic syndrome is a type of disorder where the filtering units of the kidney are damaged.

This causes the kidneys to excrete large amounts of protein from the bloodstream into the urine. Low levels of proteins in the bloodstream may lead to leakage of fluid into the body's tissues which causes oedema, or swelling.

Dr Ng Kar Hui, consultant, Division of Paediatric Nephrology at the National University Hospital (NUH), said patients who suffer from nephrotic syndrome also have very high blood cholesterol as a result of abnormal metabolism in the body.

If left untreated, nephrotic syndrome can lead to problems like blockage of blood vessels in places like the brain or kidneys.

Primary nephrotic syndrome can be caused by an impaired immune system or genetic causes, while secondary nephrotic syndrome may manifest due to many causes, such as certain medication or viral infections.

The symptoms, which include a decrease in urine output, typically begins to show in children between the ages of two to 10.

Nephrotic syndrome due to genetic causes may present itself as soon as after birth or in early childhood.

The syndrome is one of the most common acquired immune conditions affecting kidneys in children.

It affects 16 to 20 children per million each year.

Though no official registry for nephrotic syndrome exists in Singapore, NUH treats between 12 and 15 new cases of nephrotic syndrome in children per year.

Less than 10 per cent of children with nephrotic syndrome go on to develop kidney failure.

asyikiny@sph.com.sg


This article was first published on May 11, 2016.
Get The New Paper for more stories.