Baby Chi-hoi needs a life-saving heart op, but odds are stacked against 13-month-old getting one, HK donor records show

08-Jan-2019 Intellasia | South China Morning Post | 6:00 AM Print This Post

The chances of finding a new heart for a severely ill Hong Kong baby appear to be remote, after it emerged that the city has had only three child donors under the age of six in the past decade.

A Post review of donation rates shows that number increases to just nine for children 10 years old and younger, but there has been no organ donation for that age group in the past three years.

The review was prompted by the emotional plea from the parents of Hui Chi-hoi, a 13-month-old boy, who has a rare genetic heart defect and will die without a new one.

Chi-hoi suffers from restrictive cardiomyopathy, or RCM, a condition that ultimately leads to heart failure and the failure of other organs in the body. The infant, whose blood type is O positive, is presently on artificial life support in the intensive care unit of Queen Mary Hospital in Pok Fu Lam, while his liver and kidneys are also failing.

His parents, meanwhile, are hoping they do not lose a second child to the disease. Their first son died at just seven months old in 2016.

But, experts said finding a suitable organ would be made that much harder because it would need to come from another child of similar size and weight, who had brain death.

According to the Human Organ Transplant Board, the organs donated by the nine children between 2009 and 2018, included heart, kidney, liver, and parts of the eye such as the cornea and sclera.

“The donor has to be a baby of similar age and had brain death… the chance is not that high,” said Dr William Lee, president of the Hong Kong Society of Transplantation.

The hospital had previously said that Chi-hoi would need a heart from an infant who weighed between 8kg and 15kg.

Dr Chau Ka-foon, a former society president, said most organ donors in Hong Kong were middle-aged people, or older.

“Most of the donors died because of stroke, and another 20 per cent of donors died due to head injury,” she said “But, it is rare to see a young child suffer from head injuries.”

Traffic accidents, or falling objects hitting children in the head were cited by Chau as examples of fatal head injuries.

She said the youngest organ donor ever in Hong Kong was a two-year-old, who donated at least a pair of kidneys. However, the youngest heart transplant recipient was a six-year-old.

There are relatively few child deaths every year in the city. Data from the Centre for Health Protection showed that of the more than 45,000 deaths recorded in 2017, 179 of them involved children aged 14 or younger.

Alongside the relatively few number of deaths among children, the overall low organ donation rate in Hong Kong has made it even harder for a sick child to get a new organ, despite a growing effort by the government to promote organ donation.

According to the International Registry in Organ Donation and Transplantation, there were six donors per million people in Hong Kong. In contrast, there were 23 per million in Britain, and close to 47 per million in Spain.

Lee said publicity work targeting different age groups had been done, in the hope it would continue to raise public support for organ donation.

“If more people are supporting this, with the boost in organ donation rate, both adults and child patients could benefit,” Lee said.

For Chi-hoi’s parents, the family is still clinging to the hope, however small, that a donor could come in time.

“He is very cute, and he is very smart,” said his mother. “I hope he can make it this time. I hope a donation can come very soon so he can see the beauty of the world after he recovers.”

The infant’s father echoed that sentiment last week at the hospital, as the parents made an emotional plea for help for his son.

RCM is a condition in which the walls of the lower chambers of the heart are too rigid to expand as they fill with blood. The pumping ability of the ventricles may be normal, but it is harder for the ventricles to get enough blood.

With time, the heart cannot pump properly, leading to heart failure, and the failure of other organs.

The cause of restrictive cardiomyopathy, which is rare in children, is not known in most paediatric cases. But, there are some studies suggesting that individual genetic mutations may be a cause in some cases of RCM in children, according to the American Heart Association.

Since there are no effective therapies for children with the disorder, a transplant is the only option.

According to Hospital Authority figures, as of June 30 last year there were 49 patients in Hong Kong waiting for heart transplant. In the first half of 2018, there were six heart donation cases for adults.

The Hospital Authority could not provide data on how many children in the past decade required organ transplant.


Category: Hong Kong

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