‘Saving a life at any cost’: the Chinese parents flocking to big cities for a cure for their sick children

Fan Xiujuan and her husband have left home and given up more than everything they have in search of the best medical care for their son

PUBLISHED : Sunday, 15 April, 2018, 9:32am
UPDATED : Monday, 16 April, 2018, 1:40pm

On a sunny spring day, five-year-old Gu Zisen holds his parents’ hands as they walk around a Shanghai neighbourhood.

Decked out in a cap and mask, Zisen sings as he examines grass and flower blossoms in a playground. 

It’s a brief walk but his parents are relieved he is so cheerful – for much of his short life the boy has been in a life-and-death battle with aplastic anaemia, a rare bone marrow and stem cell disease.

Zisen and his parents were living 1,100km away in Ganzhou, Jiangxi province, in June, 2016 when they were given the diagnosis but the family moved to Shanghai in search of the best medical care.

They rent a small room near the Shanghai Children’s Medical Centre and spend their days shuttling to and from the medical facility.

The move has drained the couple’s finances and energy but they are convinced that they have a better chance of saving their son in Shanghai than back in their hometown.

“Our life is all about caring for my son. We are doing whatever we can to cure his illness,” Zisen’s mother Fan Xiujuan, 39, said.

“We have spent over 700,000 yuan (US$111,400) and are now living on debt and public donations. 

“I have asked myself many times how long we can keep doing this [in Shanghai]. I don’t know the answer, but I just know I should continue [the treatment] for every minute we can.”

The family is one of legions from around the country who relocate to China’s first-tier cities – sometimes for years – to find top paediatric care for their ailing children, putting pressure on an already strained system and plunging many into poverty.

They are known as “white migrants”, a reference to a doctor’s white coat, and health authorities are trying to convince them to use resources closer to home.

Earlier this month, Wang Hesheng, deputy director of the National Health Commission, said China was attempting to channel more high-quality medical resources to “down to grass-roots hospitals” to lift health standards across the population, including the country’s 223 million children aged under 14.

Accidents are the biggest cause of death in the 5-14 years age group but second is cancer, which has steadily risen in incidence in the last two decades.

About 22,000 children were on China’s national cancer registry in 2014, according to Chinese news outlet Caixin.

China’s millions with rare diseases may finally get the drugs they need

Chen Shaoxian, a public health professor at Guangzhou’s Sun Yat-sen University, said it was a common practice for parents of children with serious or rare diseases to head to bigger cities for treatment. 

“With the country’s economy growing and people getting richer, parents are devoting more attention to their children. They definitely want their children to be treated in cities with the best doctors and best hospitals,” he said.

Chen said authorities were offering incentives such as higher reimbursement rates to encourage patients to use hospitals in their hometown but that had not stemmed the tide.

“Parents care more about whether hospitals can cure their child’s disease. They won’t take the risk of going to second-class medical facilities,” he said.

And families with no help in top-tier cities soon see the bills pile up. 

“Besides big medical bills, families have to bear other costs: transport, rent, meals and above all, the loss of income,” he said. 

Those costs are exacerbated if parents seek out care in more than one city.

Fan, a housewife, and her 45-year-old husband, a worker in a printing factory, initially sought a cure in Guangzhou when Zisen was diagnosed.

She said doctors in Ganzhou had told them that Zisen would die within six months without treatment.

“They recommended we go to Guangzhou or Shanghai, saying they were not confident about dealing with this illness,” Fan said.

The family had two options: a bone-marrow transplant in Shanghai which would cost around 400,000 yuan and an immunity suppression treatment in Guangzhou that cost about 300,000 yuan.

They chose Guangzhou because it was closer to home, staying there for eight months. They rented a room near a top hospital and went through with the treatment but to no success.

Medical and insurance systems failing Chinese families battling illness

Eventually they went northward to Shanghai and Zisen had the bone-marrow transplant. But the child is far from out of the woods.

“A year on [from the transplant] and there is still resistance from his own body. It’s such bad news,” Fan said.

The couple also have a 12-year-old daughter, who lives in Ganzhou.

“She is in middle school and is not doing well at school,” the mother said. “We are worried about her, but we don’t have the energy to help her with her education.”

Fan’s extended family have pleaded with the couple to stop the treatment and go back to Ganzhou. “They say we can have another baby. But seeing my boy get better and better, how’s it possible for me to give up on him?” she said.

Shandong farmer Du Xingzhou and his wife Cheng Xuemei, both 23, have also refused to give up on their six-month-old infant Du Yuze, who was born with a liver and bile duct disease.

Doctors in Jinan, the province’s capital, operated on the boy when he was just 45 days old but the surgery failed and the child’s only other option was to have a liver transplant.

“The hospital said they were qualified to carry out the transplant, but I didn’t trust them because they are not experienced in this area,” Du said.

Instead, they went to Shanghai and waited several weeks until a leading paediatric surgeon could do the operation last month, transplanting a part of the father’s liver.

Yuze is still in an intensive care unit, where his parents go each day for a briefing on his condition.

They have no physical contact with the child and see him on a screen for less than a minute three times a week.

They trade information and support with other parents in a similar position via social media app WeChat.

“If I knew he would get such a serious illness, I would not have given birth to him,” Cheng said. “Why life is so cruel to give my baby so much pain?”

Du said his parents were against the couple’s all-out efforts to save the baby, thinking the child was unlikely to recover. 

“But I told my mother that Yuze was my son and it’s my duty to save him at any cost,” he said.