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Death of a 17-year-old teenager with cerebral palsy after his father was quarantined for six days

Originally published in Sanlian Lifeweek(三联生活周刊) on Feb. 2st, 2020

Many people had tried to save his life when they realized Yan Cheng, a 17-year-old teenager with cerebral palsy was left alone at home, but the aids failed to reach the last mile. The daily plight of this special family with cerebral palsy, autism, and single father is magnified by the outbreak of the epidemic in the rural areas.

Journalists | Dong, Jining (董冀宁); Chen, Lu(陈璐)

Translation | Chengji Translation Team

The left child has gone

'The child is gone.'

On January 29, at 2: 30 p.m., Zhu Wenqin was a little surprised when she received this message from Yan Xiaowen, without much thinking of its implications. She thought Yan Xiaowen had said the same thing two hours ago, when Yan Cheng (the son of Yan Xiaowen) was taken from his home to the town's hotel for quarantine by the ambulance. At that time, Yan Xiaowen gave her a phone call. She was very impressed that Yan Xiaowen coughed and said he was "extraordinarily happy" on the other end of the phone.

Zhu Wenqin is the head of "Snail Home", a support organization for special parents in Wuhan. She is also the mother of a child with mental disorder. She kept worrying since she heard Yan Xiaowen was taken to the town hospital for quarantine and his younger son was also taken away on Jan 23rd, leaving the elder son Yan Cheng who has cerebral palsy alone at home. Zhu Wenqing could only propose a lot of detailed requirements on the phone to the staff who was taking care of Yan Cheng.

For example, she always wanted the village doctor to take a picture of Yan Cheng's face to check the mental state of the child. She also urged those villagers in charge to keep a continuous record of Yan Cheng's body temperature, dining, and defecation, some of them don't even know how to use the WeChat.

Yan Xiaowen, 49, worked in a school kitchen in Wuhan City with his two children before. The elder son, Yan Cheng, was 17 years old, had severe cerebral palsy and couldn't live on his own. The younger son, Yan Xiaowei is 11 years old, with autism. A relative of the Yan family told us that the mother of these two children committed suicide because she could not accept the fact that her second son was again found to be "abnormal" at the age of 1. It was Yan Xiaowen who raised the children all the time.

Yan Cheng (in the wheelchair) and his younger brother Xiaowei

Zhu Wenqin told us she met Yan Xiaowen in an autistic rehabilitation event. Later 2016, she founded the "Snail Home". Yan Xiaowen joined the organization with his children and the two families became acquainted. Jan. 17^th^ was the last time Zhu Wenqin saw Yan Cheng. Yan Xiaowen and his children were taking a bus from Hankou(Wuhan) to his hometown in rural HuangGang City for the Chinese New Year, She remembered Yan Cheng was smiling happily, and Yan Xiaowen told her that "both children have been very healthy recently."

However, on January 20, Yan Xiaowen suddenly had a low fever. At that time, Wuhan's epidemic had not yet broken out. He thought it was only the flu. He went to the village health department himself for some infusion. Three days later, Wuhan's new coronavirus pneumonia epidemic broke out completely, and Wuhan issued a "locking down command". The governments across Hubei Province also carried out a series of inspections in their prefectures respectively.

Zhu Wenqin received a phone call from Yan Xiaowen at 11 o'clock on Jan 23^rd^. "He told me that he was diagnosed as a suspected case and was quarantined by the village health department. He was to be transferred to the Xinghua Town hospital the next day, where the central treatment point of the county was set up."

Zhu said that Yan Xiaowen was so depressed because he had no idea about the severity of the epidemic. Yan was also worried about himself, "If I'm dead, how will the two children live?" Apart from this fear for the unknown virus, there was another fear which was more specific--the CDC personnel took away his younger son with him but leaving the elder one with cerebral palsy alone at home. Zhu was really astonished when she heard about this. Yan Cheng once lived at her place, she knew he could not dine and defecate independently.

Yan Xiaowen said, "The village director Chen Jingyou told me that Yan Cheng had to be kept at home because of his risk of contact transmission". As a matter of fact, the condition of the town hospital was not so good, Yan Xiaowen had to share a ward with another suspected patient. The younger son, who was not yet infected, also slept in the same room with them.

Yan Xiaowen and his younger son in quarantine

Meanwhile Wuhan City and almost the entire Hubei Province went into lockdown, it was impossible to pick up Yan Cheng, even if Zhu Wenqin and other few parents wanted to.

On Jan 28^th^, Yan Xiaowen wrote a post on Weibo ask for help "Due to the worrying that Yan Cheng could be already infected, the authorities of the village still fail to find people who can take care of his sanitation and meals, although they have been coordinating from Jan 23^rd^ till 27^th^."

What Yan Xiaowen and the volunteer mothers could only do was to make a few more calls per day. On Jan. 28^th^, when the public letter was already posted, Yan Xiaowen called the village secretary eight times from 10 p.m. to 5 p.m. lasted 31 seconds to 7 minutes. But they still did not know who would really take care of Yan Cheng. On the contrary, the fragmented feedback from everyone made them all confused about Yan Cheng's situation.

At noon on the 29th, Zhu Wenqin felt much relieved when she heard that Yan Cheng had been transferred to a concentrated settlement. The problem of Yan Cheng being alone at home without anyone to take care of him, which had been worrying her for six days, seemed to be solved. The pictures were sent to the Wechat group which was organized for rescuing Yan Cheng, via the local China Disabled Persons' Federation (CDPF) and then a manager of China Association of Persons with Psychiatric Disability and their Relatives (CAPPDR). From the pictures she saw the professional ambulance, and medical staff in white coats and light blue protective masks carrying Yan Cheng, who lied on the stretcher and could not move freely, onto the ambulance.

Around 11:30, an ambulance from Hua He Hospital was sent to take Yan Cheng to the central monitoring point. At about 12:30, the medical staff found that Yan Cheng\'s breathing had stopped, his pupils had been dilated, and he had no pulse or heart rate, and determined Yan Cheng's death.

There were more than 200 parents from all over the country in the WeChat group for the rescue. All of them were very excited until Zhu Wenqin got the message from Yan Xiaowen, "The child is gone". It took her a moment to think about the meaning of this sentence. She dialed Yan Xiaowen's phone number. He was crying on the other side, "The child has gone to heaven"...

Remote rescue and the last mile

"Do you know how it feels? It's just like we're trying to revive someone and it's working. The hope is getting bigger and bigger. Suddenly the result hits us and the person is announced dead." Dai Rong, director of Guangzhou Yang'ai Special Parents' Club, who helped to coordinate the nationwide rescue for Yan Cheng, told our reporters. Many people actually tried to save his life when they realized that Yan Cheng, a teenager with cerebral palsy, was left alone at home.

"We really came up with a lot of ideas." Dai Rong said she was already in contact with the CAPPDR on Jan 23^rd^ when she first heard about this, hoping to find a special care for Yan Cheng using the system of the CDPF, considering that Yan Cheng lives in the rural area out of the reach of NGOs. Wen Hong, the chairman of the CAPPDR, also personally contacted the local association for disabled people to intervene in the matter.

January 23 around midnight Zhu Wenqin got in touch with the chief of the CAPPDR Hubei Branch, who claimed that the association for disabled people of the province has already called the county disabled association overnight, and then the county disabled association contacted the village, asking them to give Yan Cheng a meal every day. The village secretary also claimed that he got the phone call from the county disabled association.

On the morning of Jan 24th, the village council and the village doctors went to Yan Cheng's home to feed him and monitor his body temperature.

Considering Yan Xiaowen's special situation of quarantine, a Shanghai public welfare organization even suggested whether some legal aid could be provided. The idea was to appoint a temporary "agreed guardian" or "social guardian" for Yan Cheng, under the revised General Principles of Civil Law. This guardian can be one of his relatives, or one of the village leaders such as the village secretary, who can temporarily take the guardian's responsibility on his behalf. However, Yan Cheng did not manage to wait till the moment that these measures take into effect.

After Yan Cheng's death, Zhu Wenqin and other volunteer mothers chronicled all the phone calls and conversations with Yan Xiaowen and people in the village.

January 23, Yan Xiaowen's sister received a phone call from him and fed Yan Cheng once. Since Yan Xiaowen's mobile phone was out of power, Zhu Wenqin contacted her in the evening, and a cousin of her, hoping that they can visit Yan Cheng again. But the cousin said it was already 8:30 pm, which was too late and he would try to go there tomorrow.

Jan 24^th^ morning, Yan Xiaowen's sister went to see Yancheng again to feed some food. She said Yan Cheng "was OK". Village principle Chen Jingyou also claimed he "went there once and fed a meal".

Jan 25th, the village doctor came to Yan Cheng's home and "took a look around but didn't enter". Another volunteer nicknamed 'NuanNuan Mom' sent a message on WeChat asking the village principle and the town hospital to take care of the kid. The villager principle did not reply.

Jan 26th evening, the village council, the director of the town hospital and civil affairs staff of the county went to visit Yan Cheng, and fed him some egg cakes.

Yan Xiaowen's sister has been sick since Jan 24th. She was taking infusions all the time at the town hospital from Jan 24^th^ to Jan 26^th^, according to Yan Xiaowen. Jan 27^th^ morning, she was going to visit Yan Cheng, but was stopped by her husband. It was not until the morning of the 28^th^ that she paid a visit to Yan Cheng, together with the village principle Chen Jingyou and the village doctors. Zhu Wenqin got their feedback that Yan Cheng was "wet all over his body".

Yan Xiaowen's sister later described Yan Cheng's state at that time to other media. "He was lying in a chair, with his head hanging outside. His mouth and face were covered with dirty stuff. So was his quilt. I brought some hot water with me so I wiped his face and his mouth clean, changed a diaper for him and fed him a half cup of water. He ate almost a half cup of rice, and then stopped eating."

"From January 28^th^, Yan Cheng was not able to take in any food. On that evening, Chen Jingyou (the village principle) brought the village doctors to his home and fed him two glasses of amino acids; On the morning of Jan 29^th^, the newly arrived nursing staff fed Yan Cheng two cups of amino acids ..."

On the evening of Jan 28th, the village principle brought village doctors to check Yan Cheng's body temperature.

Zhu Wenqin told us that Yan Cheng had the opportunity to be taken into hospital on Jan 26^th^. At 9 pm that night, Yan Cheng was arranged by the civil affairs department to take a body exam at the town hospital. Zhu Wenqin called the village secretary at that time to ask if Yan Cheng could stay in the town hospital. But the village secretary responded, "Such a child without ability to live on his own... His father is a suspected patient of the novel coronavirus. He is a highly dangerous person with high infectivity. The town hospital is not a quarantine point. There are no protective measures. If he can not control his defecation, it will contaminate the whole ward as we clean it up." As a result, Yan Cheng was carried home again after midnight.

Yan Xiaowen mentioned in his requesting letter that the reason no one in the village wanted to take care of Yan Cheng was due to the lack of necessary protective tools. "Because the child had close contact with me, and had a low temperature fever once, and was also classified as a suspected case and was quarantined at home, also because there were no protective devices, it was impossible to arrange personnel to stay there all the time and take care of his meals, defecations and sanitations. I hope someone can donate necessary protective equipment." In some of the rescue pictures that Zhu wenqin collected, we can see that the protective equipment that was accessible to villagers only includes masks, raincoats and plastic sheets. Yan Xiaowen provided the phone number of Liu Zhenglei, a doctor in the town hospital in his letter, however he claimed "there was no equipment being sent over here" in his previous interview with the media.

Yan's Village is located more than 150 kilometers northwest of Huanggang City, and 120 kilometers from Wuhan. More than one year ago, Zhu Wenqin went there with Yan Xiaowen and his sons. She did not have much impression on the village. But it was clear that Yan Xiaowen's family was not rich among the villagers. They were living in a three-room house which was built in the 'Precise Poverty Alleviation Project' by the government. Inside their house there was no decoration and no heater. This is where Yan Cheng spent the last six days of his life.

A person named Li from the Hong'an County Disabled Persons' Federation told us that the Disabled Persons' Federation in the county did receive a request from higher administrations. However, in the practical rescue process, their federation could only play a supplementary role. He said "It is not convenient to reveal exactly what we did because this matter is still under investigation." One group leader in Yan's village expressed his opinion that "There are only 3 officers in the village, but there are dozens of families who work outside and come back at this time. It costs a great amount of effort to count the quarantine situations and body temperatures of people. Higher officers check their data twice a day, and emphasize the responsibility of any hidden or leak constantly when they have meetings. Meanwhile, the village officers are required to organize the villagers to block the road or set up checkpoints. It was impossible to concentrate on Yan Xiaowen's family when faced with such a terrible epidemic."

Tragedy of special families

Compared to the anger of the outside world when people heard the news that Yan Cheng passed away, there was more negative and sadness in the WeChat group mainly composed of parents of autistic children. For many of them, it is their first time to experience such a rescue. It was usually a broken family or financial problems before. "Moms talk about the most these days is what if it's my child?", said Dai Rong.

After Yan Cheng passed away, Yan Xiaowen, who was still quarantined in the town hospital, was asked to sign a 'power of attorney'. "The dead body must be burnt within 24 hours", the officer told him like this, according to Yan Xiaowen, "This is based on the instructions and the regulations of the government."

But soon Yan Xiaowen realized that once he signed it, he would never see his son again. He invited a crowd of journalists into a WeChat group, and claimed "The signature of attorney was done under force. I hope, at least, my son's body is well preserved, and let me see him again after I leave the hospital. If possible, I also like to donate the body."

He has been taken good care of for 17 years. Zhu Wenqin had known them for nearly nine years and had never seen either of sons have a little dirt. "Yan Cheng couldn't move his entire body, but his daily clothes, including the pillow towels, were changed every day. It's really hard for Yan Cheng's father." She said she didn't know whether it is because she is also the parent of an autistic child, she has a good impression of both children. "Yan Cheng was just a kid who smiled a lot. As long as you talk to him, he would smile at you, and screamed 'Mom' whoever he sees.

Yan Cheng

Yan Xiaowen has been living in Wuhan since Yan Cheng's birth. There's only a 20-day difference between the birth of Zhu Wenqin's son and Yan Xiaowen's younger son. She understands Yan Xiaowen's thought, "big cities have relatively more resources for rehabilitation, which means a better rehabilitation environment, and it's more convenient for people to support each other."

Like many autistic or other special families, they devoted almost all their energy to rehabilitating their two children. They founded the 'Snail Home' together in 2016, turning a 100-square-meter house completely into a room for activities. Children do musical training and African drumming every afternoon, accompanied by their parents. A double-layer bed was put on the balcony. If everything had gone well, Yan Xiaowen's family would be resettled there in about half a month.

February 1 morning, the headquarter of new coronavirus pneumonia control of Hong'an County announced that, Yan Cheng, who had a close contact with the CoVID19 patient Yan Xiaowen, was confirmed to be dead in the town's central observation point on January 29. The cause of death is under experts' investigation.

According to the 'United Investigation Team', Yan Xiaowen was unable to take care of Yan Cheng's daily life because of the quarantine during this period. Then he entrusted his relatives, village officers and village doctors to look after Yan Cheng. All of them took some care of Yan Cheng every day. But some officers did not fulfill their duties. The CCP branch and the government of the Huajiahe town, did not exhibit an appropriate attitude and did not do real jobs. The CCP secretary and the head of the town have already been deposed.

The National Health Commission held a press conference on the afternoon of Jan 31^st^. The Director of the Ministry of Civil Affairs, Chen Yueliang, said that the Ministry of Civil Affairs and the National Health Commission recently issued an "Urgent Notice on Further Mobilizing Urban and Rural Community Organizations to Control the nCov Pneumonia", in which a more explicit request was made and required more support for families whose members are in the quarantine.

Dai Rong said that their parents' group of mentally disordered people would have their own reflections. Maybe every parent in such a family understands what they mean to their children, and also understands the social support for mentally disordered people is far from enough. However, people sometimes unavoidably neglect some problems. "If this difficulty happens in the normal time, we may think at most we can send a volunteer or a car to the village and take the kid out. This is an extreme case indeed, but does it indicate that there may be more potential tragedies like this in the vast rural environments?"

Dai Rong hoped that the tragedy would teach us a lesson "The difficulties these families might face in normal times may be just some difficulties, but if the society does not pay enough attention to them, they will be magnified to become disasters in a particular period."