The parents of two-year-old Wong ZiQin have been waiting for her to come out of a medically induced coma that her doctors put her into last Saturday after her heart stopped and she had to be resuscitated.
Even if she recovers, her father, Mr Keller Wong, 42, said the wait is likely to be long for the heart transplant ZiQin needs to lead a normal life. Born with a congenital heart condition, she has been through five heart operations already.
"She's won all the battles so far, so we hope she will win this one," the freelance web designer told The Straits Times yesterday.
But the number of child organ donors here is low.
Only Singaporeans and permanent residents aged 21 and over who are not mentally disordered are covered under the Human Organ Transplant Act, which makes the donation of their kidney, liver, heart and corneas the default in the event of death.
ZiQin's mother, who gave her name only as Madam Teo, said they hope the Act will be extended to cover children and infants, who could donate child-sized organs.
"The Government is encouraging couples to have more babies, they should give them a greater chance to survive" said the 43- year-old administrator.
The Wongs found out there was something different about their only child's heart during pregnancy.
She was later diagnosed with Taussig-Bing syndrome, a rare condition where both great vessels in the heart are connected to the right ventricle and there is also usually a hole in the heart. This results in not enough oxygen-rich blood being pumped to the rest of the body.
Mr Wong left his job in retail sales so that he could do freelance work and spend more time looking after ZiQin, who relies on a pacemaker.
He said it is a tedious task as she needs medication three times a day to regulate her water intake and heart function. She also suffers frequent fevers.
"She's taking more medication than breakfast," he said. His mother-in-law also helps to care for her.
ZiQin had been doing well in recent months. But after a persistent cough and fever, she was taken to KK Women's and Children's Hospital (KKH) last Wednesday.
Three days later, a call came from the hospital saying her heart had stopped. By the time the Wongs got to the hospital, "her body was pale, her eyes had rolled back and her lips had turned purple", her father recalled.
Although ZiQin was resuscitated, she remains on life support and has been in a medically induced coma to reduce the seizures and fits her brain is experiencing.
Because of this, doctors have not been able to check how much brain damage she has suffered due to lack of oxygen.
OUTPOURING OF COMPASSION
Even strangers came to chant prayers at her bedside and a Catholic church dedicated an afternoon mass to her.
MR KELLER WONG, the father of Wong ZiQin.
Her parents are prepared for the worst, but hope she will recover from the ordeal so that she can be placed on a Berlin Heart - an air-driven pump that helps take over the job of a child's heart - for a couple of years while hoping for a heart transplant.
This is likely to cost them around $350,000 a year excluding hospital fees. They have already been paying for medical costs from their Medisave accounts, with help from the hospital's medical social work department.
ZiQin is known as the "nurse manager" around the hospital, as she enjoys being carried around by the many nurses.
She also enjoys watching Dave and Ava, and ChuChu TV cartoons on her parents' smartphones.
Mr Wong shared his daughter's story on his Facebook page on Tuesday in order to raise awareness about the experiences of children who need organ transplants.
There was an outpouring of support.
"Even strangers came to chant prayers at her bedside and a Catholic church dedicated an afternoon mass to her," said Mr Wong, adding that he and his wife are touched by the compassion.
They have also been inspired by a family they met during a previous KKH stay whose son suffered from Kawasaki disease, which affects the blood vessels and can lead to heart complications. The son died last year before a transplant heart became available.
They plan to continue to advocate for greater awareness about the need for child-to-child organ transplants.
Mr Wong added: "Even if ZiQin may not have the chance to use it, other kids might."