Two-year-old with rare heart condition dies without an organ donor

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“We hope we can inspire others with more stories of ordinary kids showing extraordinary willpower to live on."

Two-year-old Wong ZiQin from Singapore had been fighting for her life since her birth; she was born with a rare heart condition and needing a heart transplant.

However, on July ten, her family made decided to cut off her life support. According to her father, Mr. Keller Wong, they came up with the decision before his daughter’s blood toxicity rose and her condition deteriorated even further.

According to a Straits Times report, ZiQin was born with Taussig-Bing Syndrome; both her great vessels were connected to the heart's right ventricle. With Taussig-Bing Syndrome, there is usually a hole in one’s heart.

As a result, not enough oxygen gets pumped throughout the body; in fact, ZiQin has undergone five major operations to address this problem.

Most recently, she had suffered a bout of fever and cough and was confined in the hospital. Soon thereafter, her heart stopped and she was placed on life support.

At first she seemed to be improving despite being in a coma. By midweek, the doctors reduced the sedatives to allow her to slowly come back from coma, but she didn’t respond.

"The doctors checked her eyes with a torchlight and there was no sign of life; at that point we had some idea of what needed to be done," said her father.

Now ZiQin’s family hopes that her tragic story will help raise awareness about the need for more child organ donors.

Said Mr. Wong's sister: "She wasn't the only one; in the hospital we met many other children in the same situation, so we hope things can improve for them.”

Meanwhile, a spokesperson from Singapore’s Ministry of Health said that as of yet paediatric heart transplantation is not available.

“But patients aged 16 and below and who weigh above 30kg can be placed on the national waiting list for the adult heart transplantation programme at the National Heart Centre Singapore,” said a Straits Times.

At 8kg, ZiQin had been small for her age, but her father said she was a friendly child.

"Sometimes when she felt you were sad, she would pat you on the back to comfort you," he said.

Mr. Keller now plans to set up a support group for parents like him, helping them cope with the stress of waiting for an organ.

"I can feel the desperation of other parents...We hope we can inspire others with more stories of ordinary kids showing extraordinary willpower to live on."

ZiQin story was shared on Facebook by her father, and some people who got to know the two-year-old’s journey on social media visited her wake.

In her father’s eulogy, he said: “Her spirit and character really brought people together. She reached so many people and raised awareness. She made a difference.”

Photo credit: Keller Wong / Straits Times

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Written by

Vanessa Tang