Meet Bryan, the boy with no kidneys. This is his mum, hooking him up to a dialysis machine. She does this 10 hours every night. This is how she feels...
AFTER years of trying, Madam Serene Ng finally got pregnant.
And she had twins – a girl and a boy.
But after they wereborn, things went horribly wrong.
The girl was healthy, but the boy, Bryan Liu, was born with only one kidney, which was small and with abnormal tissues.
By the time he was two, it failed. He then got one of his mother’s kidneys and became the youngest kidney transplant patient here.
Then that also failed, because of a rare condition caused by a virus, and had to be removed. Four-year-old Bryan has no kidney now and survives on dialysis.
Madam Ng, 36, said that after she got married in 1998, she and her husband, Mr Victor Liu, 48, tried but failed to have kids.
The couple opted for intrauterine insemination treatment at the end of 2002.
On their tenth attempt, after spending about 6,000,Madam Ng was got pregnant.
But Bryan was born with a rare triple whammy: renal hypoplasia-dysplasia with agenesis of one kidney.
Professor Yap Hui Kim, head and senior consultant of the Paediatric Nephrology, Immunology& Urology division at the National University Hospital, said Bryan is one of the very few with this condition that she has treated in her 30 years of practice.
Madam Ng, a part-time shop assistant, said:“We were very shocked because my antenatal scan showed that everything was okay.”
Such scans during pregnancy could pick up kidney abnormalities. If it did, Madam Ng said she would have gone for an abortion.
She said: “I’d rather be childless than see him suffer like this.”
Bryan had to drink more fluids than normal babies to keep his kidney going as long as possible. As a one-year-old he was drinking one litre a day. By the time he turned two, he had to drink three litres a day.
Then his only kidney failed completely.
Dialysis or transplant
Bryan had to undergo haemodialysis three times a week to clean his blood.
Doctors then gave them two options – to continue with dialysis or go for a transplant.
They chose transplant because dialysis entails a lot of restrictions on activities and diet. Bryan’s father, a telco group manager, and his sister, were unable to donate their kidneys to him as they have different blood types.
But his mother’s kidney was a perfect match. Madam Ng donated a kidney to him in May 2008. At two years and five months old, he was the youngest kidney transplant patient in Singapore. And it looked like their troubles were finally over.
But after nine months, his transplanted kidney failed too – this time due to a BK virus which the mother had passed to him.
This common virus infects most people and generally causes no symptoms.
But it may be reactivated when a patient is on immunosuppressive therapy following an organ transplant and can affect the kidney.
That happens only rarely. Prof Yap said: “Bryan is one of the unfortunate transplant recipients who was affected by BK virus.”
Madam Ng said they spent close to $60,000 to treat the virus while Bryan spent half his time in the hospital. Earlier, they had spent another $20,000 after subsidies for the transplant procedure.
At this time, Bryan grew to twice his normal size due to the side effect of his medication. He weighed 22kg when his sister weighed only 13 kg.
His body, already struggling with a weaker immune system because of the medication, just couldn’t fight the virus. He had to take the medication to stop his body from rejecting his mother’s kidney, said Prof Yap.
Bryan’s transplanted kidney had to be removed in September last year.
By then, he had two major operations, a series of minor ones.
Now, Bryan has no kidney.
He needs a 10-hour peritoneal dialysis every night to remove toxins from his body.
During the dialysis, he is hooked to a machine that pumps a special sterile fluid into his abdomen through a permanent tube that is placed in the peritoneal cavity.
The fluid circulates through the abdomen to draw impurities from surrounding blood vessels, which is then drained from the body.
Despite the ordeal, Bryan remains cheerful and is a cheekyand playful boy.
He goes to childcare and plays at the playground. Sometimes he even bullies his elder twin sister, Charmaine.
But unlike his peers, little Bryan does not feel thirsty. Nor does he urinate. And he can take only half a litre of water a day.
He can’t go swimming for fear of infection.
He can take only milk powder for babies as it is lower in potassium.
And until now, he has tasted pizza only twice and french fries three times.
These foods are high in potassium and an excessive potassium level in the blood can result in heart failure.
Though his parents do not treat him differently because of his condition, his sister, who is normal, has to do and eat what he does.
His mother said: “Whatever the brother cannot do, she cannot do.
“For that I feel very sorry to the sister.
“But I do not want him to grow up feeling inferior or even arrogant for that matter.”
His growth is stunted
Now, as a result of having no kidney, little Bryan’s growth is stunted. He faces the risk of becoming anaemic and his bones might fracture, said Prof Yap.
To control these complications, he is now on growth hormone injections fortnightly.
He is also on a cocktail of medication twice daily to control his blood pressure.
Said Prof Yap who treated him: “The next step in treatment for him is to dialyse him adequately, and control all complications such as high blood pressure, anaemia and mineralbone disease.”
As long as he has no heart complications, he will be able to live on dialysis, Prof Yap said.
She added: “If he is dialysed well, he should be able to attend normal school, and participate in extra-curricular activities.”
Needs matching kidney soon But this is not the ideal solution.
In the long term, Bryan could get into trouble, such as getting high blood pressure and heart disease by the time he is in his 30s or 40s, said Prof Yap.
For now, dialysis is his best bet, until a matching kidney donor is found.
Said his mother: “We are very helpless now. There’s no match in the family. I don’t want him to go just like that. Not after I’ve spent so long with him.
“If I don’t do something for him, I don’t know what will happen. There’s no guarantee nothing will happen.”
He is currently on the national waiting list for a kidney and it will take seven to eight years to get a cadaver kidney, said his mother.
The Ministry of Health said there are 439 patients on that list as of April this year.
But, he is not the youngest on the list currently. There’s another boy a year younger than him who is on the list now, said Prof Yap.
The Liu family is hoping for an altruistic live kidney donor no matter how slim the chances are.
Madam Ng said: “Financially, we are doing okay. We are not asking for money. Instead, we are asking for anyone who can help to make our son’s life better.”
They are also looking at the possibility of paired-matching – one of the amendments in the Human Organ Transplants Act that was passed last year.
In paired-matching, a matching donor from the family of patient A donates to patient B and vice versa.
This can help in cases where there are no matching donors in a patient’s family.
But, paired-matching involves heavy coordination between donors and recipients because the transplants have tobe done simultaneously.
If a matching donor comes along, there is still one more obstacle to overcome – whether Bryan will be afflicted by the same BK virus again.
Prof Yap said: “We can try to reduce the immunosuppression earlier, but unfortunately this may lead to (organ) rejection.
“Currently we do have a new test available in Singapore which allows us to measure the immune reactivity of the recipient to the graft.”
The results of this test could guide the doctors in lowering the medication and preventing activation of the BK virus.
And that could be the miracle that Bryan’s family is waiting for.
■ Hypoplastic kidneys are small and contain fewer than normal filtering elements.
■ Dysplastic kidneys contain components that are abnormally developed, making the kidney less functional and causing dehydration.
■ Agenesis of one kidney means being born with only one kidney.
■ Bryan, who suffered from all three conditions, is very lucky to still be alive, said Dr Akira Wu, a renal physician with Mount Elizabeth Medical Centre.