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Ng Kang-chung

Danny Mok

A Hong Kong couple is facing a heartbreaking wait to see if their second son dies of a rare genetic disorder.
The parents of 13-month-old Hui Chi-hoi, lost their first child in 2016 at seven months to restrictive cardiomyopathy, or RCM, which affects the heart.
Now, with time running out, baby Chi-hoi’s only chance lies in finding a suitable donor so he can undergo a heart transplant.
The toddler, whose condition worsened last month when he caught a cold, is now living on an artificial cardiac device, while his liver has started to fail.

On Wednesday, his mother, an English-language teacher, who did not want to be named, made an emotional plea for a heart donor.
“He is very cute, and he is very smart,” she said. “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.”
Chi-hoi’s father added: “Last time we could not save his brother. We hope we will not lose him this time.”
The infant, who is in the intensive care unit at Queen Mary Hospital, weighs about 10kg. His blood type is “O positive”.
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.
My mum travelled to India to save my life. This is how I thanked her
With time, the heart cannot pump properly, leading to heart failure, and the failure of other organs,
The cause of RCM, which is very 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 RCM, a transplant is the only known intervention.
“Chi-hoi is critically ill and is desperately waiting for a heart transplant,” said Dr Timmy Au Wing-kuk, chief of Queen Mary Hospital’s division of cardiothoracic surgery.
Chi-hoi has been put on a paediatric ventricular assist device, which has served as an external pump, since December 21, but Au said the infant had suffered from internal bleeding as a result, while there was also the danger of blood clots appearing.

The toughest challenge will be in finding a suitable heart from another infant, which will need to weigh between 8kg and 15kg, Au said. And even if they can secure one, Chi-hoi would still face a 20 per cent chance of death during the high-risk surgery.
His survival rate after a transplant would also be in doubt.
“It’s difficult to say [about his survival ], as cardiologists around the globe don’t have much experience on [transplants for young children],” Au said. “There were only one or two cases each year in Southeast Asian regions.”
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.
There were 13 heart donations in 2017.


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Hong Kong parents face agonising wait for heart donor as 13-month-old son’s life hangs in the balance

Hui Chi-hoi with his parents at Queen Mary Hospital. Photo: Handout

Mr and Mrs Hui, parents of baby Hui Chi-hoi gets emotional when they talk about their first son, who died of Restrictive Cardiomyopathy not long after he was born. 02JAN19 SCMP/ Xiaomei Chen

Baby boy Hui Chi-hoi is waiting for a heart donation at the Queen Mary Hopspital. Handout from Queen Mary Hospital.

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Hong Kong

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Hui Chi-hoi, who weighs 10kg, is suffering from rare genetic disorder restrictive cardiomyopathy
Parents have already lost one son, who died from same disease at seven months old in 2016


Hui Chi-hoi, who weighs 10kg, is suffering from same rare genetic disorder, restrictive cardiomyopathy, that killed his brother in 2016.


Hong Kong parents face agonising wait for heart donor as 13-month-old son’s life hangs in the balance

.css-1mniedq{color:inherit;font-weight:inherit;font-size:inherit;font-family:inherit;line-height:inherit;}Hui Chi-hoi, who weighs 10kg, is suffering from rare genetic disorder restrictive cardiomyopathy Parents have already lost one son, who died from same disease at seven months old in 2016

Hui Chi-hoi, who weighs 10kg, is suffering from rare genetic disorder restrictive cardiomyopathy

Parents have already lost one son, who died from same disease at seven months old in 2016