When the transplant option is off the table

Singapore — With fewer co-existing diseases, young organ transplant recipients typically see better outcomes than their adult counterparts.

But for some children and youths, the option of a transplant may not be viable for a host of reasons.

The National University Hospital (NUH), the only public hospital here with a paediatric kidney and liver transplant programme, sees five to seven children and youths each year with newly diagnosed end-stage renal disease who are best treated with a kidney transplant.

But about two in five of them are currently not on the waiting list as they are ineligible, medically unsuitable or are being assessed.

Some may also be in the midst of attaining the minimum weight required for the procedure — in Singapore, a child has to weigh at least 10kg to undergo a kidney transplant, said Professor Yap Hui Kim, senior consultant and head of the Paediatric Nephrology division at NUH.

Then, there are patients with diseases that have a high chance of recurring after a transplant. One such disease is a progressive condition called focal segmental glomerulosclerosis, which causes scar tissue to develop in parts of the kidneys that filter waste out of blood. It is one of the common causes of end-stage kidney failure in children here.

It is also the disease Mr Sudhakar Akkipeddi, 21, was diagnosed with at the age of two. His kidneys became irreparably damaged when he was 17 and the polytechnic student began haemodialysis. However, because of his smaller veins and the tendency to develop blood clots due to his illness, serious complications came up while finding suitable dialysis access.

He underwent a kidney transplant in India in 2014 after finding a successful match but the disease that caused his kidneys to fail recurred in the transplanted organ.

Ten months later, the damaged transplanted kidney was removed and Mr Sudhakar, a Singapore permanent resident, found himself back at square one. On top of the pain suffered when his condition recurred, Mr Sudhakar also had to deal mentally with the prospect of returning to dialysis and more potential complications.

TRANSPLANTS NOT FOR UNCURED CANCER PATIENTS

Although liver transplants have been carried out on babies here, the prognosis is better for children of a larger size, said Professor Quak Seng Hock, senior consultant and head of NUH’s division of Paediatric Gastroenterology, Hepatology and Nutrition. Smaller babies tend to have more technical complications as their vessels are smaller.

A liver transplant is also usually avoided or postponed when a patient is not fit for surgery, due to an infection or malnourishment for instance, he said.

A transplant is not an option for cancer patients who are not considered cured, or those with co-existing diseases where a transplanted organ may not function well — those with severe heart disease with heart failure, for instance, said Prof Yap.

Children who are severely mentally handicapped and totally bedridden would not be considered for an organ transplant in most transplant centres, added Prof Quak.

“As an organ transplant is a resource-intensive undertaking, priority would be given to those who are expected to function normally in terms of their daily activities and able to be independent,” he said. “Fortunately, it is uncommon for us to turn down children who need a liver transplant. In the last 10 years, this has 
occurred in fewer than five instances.”

The Ministry of Health and KK Women’s and Children’s Hospital did not respond to media queries about heart transplants for children here.

Cadaveric donor organs are hard to come by in Singapore despite the Human Organ Transplant Act, which allows for the kidneys, liver, heart and corneas to be recovered in the event of death for the purpose of transplantation.

Without an organ transplant, affected children often face a bleak future. For example, those with the congenital liver disease, biliary atresia, who require a liver transplant will not live beyond their second year without it, said Prof Quak.

Those on dialysis can survive more than 20 years but face a high risk of developing other complications — in particular, heart disease and stroke, in the longer term, said Prof Yap.

NUH, where a 16-year-old girl recently received part of the liver of a complete stranger, a 54-year-old man, currently has three paediatric patients on its liver waiting list and 13 paediatric patients on its kidney waiting list.

The Ministry of Health could not provide figures on children awaiting an organ transplant by press time.

Mr Sudhakar undergoes dialysis thrice a week and plans to register on the local kidney waiting list, which has an average waiting time of nine years. He hopes his condition remains stable, so that he can continue with his daily routine and do the things he enjoys, such as attending an annual sleepover camp organised by the Shaw-NKF-NUH Children’s Kidney Centre for children and youths on dialysis.

The young man, who lost his mother in 2011 to cancer, advised his peers living with chronic illnesses not to lose their optimism.

“Although I’m realistic about my current situation, I do not want to be overly pessimistic. Some days can be really tough but what I’ve gone through has made me sturdier. I’m also fortunate and thankful for my 
father’s unwavering care and support all this time,” he said.

SWIMA-ATHON TO SUPPORT PATIENTS

The Tanglin Club and the Shaw-NKF-NUH Children’s Kidney Centre (CKC) will be organising a 10-hour swim-athon this Saturday to fund programmes supporting NUH paediatric patients with lifelong chronic illnesses.

Funds raised will go to the CKC Annual Camp, Project Dreamcatchers (a visual arts exhibition by adolescents with chronic childhood diseases) and children’s kidney research. To donate, visit http://www.tanglinclub.org.sg/events/events/high-ten-a-ten-hour-charity-swim.html .