Parents of tot with rare heart disorder renew plea

Local | Jane Cheung 21 Mar 2019

It is the golden period for a 15-month-old baby boy to get a heart transplant, his doctor said in a public appeal for organ donation.

Hui Chi-hoi suffers from a rare genetic heart disorder. He is eating and smiling more, as he managed to skip kidney dialysis for a week.

The baby's improved health means he is in the best condition to receive a transplant, said his doctor, Timmy Au Wing-kuk, head of cardiology at Queen Mary Hospital.

Chi-hoi, the youngest SAR patient involved in a public plea for a heart donation, has already been on the top of the transplant waiting list for three months.

He is still waiting for a suitable heart from a baby donor who has blood type O and weights eight to 15 kilograms, after his parents made a desperate public appeal for a heart donation in January.

Au renewed his call for the public to donate, so Chi-hoi and others queuing for a transplant can enjoy a new life.

Chi-hoi's parents told the media yesterday their toddler is slowly recovering from surgery to implant a biventricular assist device - which works like a mechanical pump - to replace the function of his failed heart.

His brain has seen great recovery from previous internal bleeding. He has also resumed kidney function last week and he can now urinate normally.

His parents said the tot is eating well and become more and more active, and can also respond to commands.

They thanked the doctors and nurses for treating their baby.

On January 2, the parents and doctors spoke at a press briefing to publicly asked parents of newly deceased children to consider their plight.

Chi-hoi is suffering from restrictive cardiomyopathy. The rare disease, caused by genetic mutation, causes fibrosis in the heart muscle and prevents the heart from contracting normally. Thus, blood cannot be pumped out of the heart and forms clots in the heart and blood vessels connected to it.

Aside from the requirement of having the same blood type, the donor should also weigh between eight and 15 kilograms -about the same weight as a child between six months and five years old.

But Lun Kin-shing, the hospital's cardiac pediatric unit consultant, admitted it is difficult to find a suitable heart as the local child mortality rate is very low.

"The youngest heart transplant recipient in the city was a six-year-old boy, who in 2009 received a heart from a seven-year-old donor," he said, adding the symptoms of Chi-hoi's heart failure appeared last July, when he was eight months old.

Doctors managed to stabilize him with medication, but in December, his health took a turn for the worse after he caught the flu.

Despite being able to keep the baby alive, it is not a permanent solution, and Lun said a heart transplant is the only way to deal with it.

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