English|My Vegetative Daughter and Me | Online Gallery
BEIJING, April 18 (TMTPOST) -- Someone in a "vegetative" state is, in medical terms, a patient with chronic alteration of consciousness. They are still alive but show no signs of awareness. They are in a coma after traumatic brain injuries, strokes, or hypoxic-ischemic encephalopathy.
According to some researchers, there are about 300,000 to 500,000 vegetative patients in China, with estimated 100,000 new cases per year. Epidemiological statistics show that the average survival time for vegetative patients is less than 3 years. Cases where a patient survives more than 10 years are very rare. Most patients remain vegetative until death, with very rare exceptions where patients regain consciousness and part or all of their body functions.
In Online Gallery Vol. 119, we interviewed a mother who has looked after her vegetative daughter for almost 11 years. After going through so many hardships and "discrimination", they settled down in a vegetative patient care center. Through their bitter experiences, we may have a glimpse of the predicament of families with vegetative patients and explore the possibilities of how society can help these families return to a normal social life.
She opened her eyes but became a vegetative patientPan Shufei, 30, has ruddy cheeks and silky skin. Eyes shut, she lies in a wheelchair, sleeping quietly—one would find it difficult to image her as a vegetative patient had it not been for the nasogastric tube inserted through her nostril, the tracheostomy in her neck, and her crooked wrists and ankles beneath the blanket.
Pan Yunmei looks after her daughter Pan Shufei 24 hours a day. Feed liquid nutrition through the nasogastric tube 6 times daily. Turn, reposition, and massage every one and a half hours. Perform phlegm suction and change underpads from time to time.
As a result of looking after her daughter over the past decade, Yunmei has developed the habit of sleeping with full clothes on. At night, she rarely sleeps for more than 2 hours straight. Her bed is side by side with Shufei's bed because she must get up instantly as soon as she hears the deep groan from Shufei's throat to suction sputum until Shufei quiets down again.
She insists on carrying Shufei from the bed to the wheelchair every day. This helps sputum excretion and the restoration of Shufei's respiratory system functions. Shufei is 1.73 meters tall and weighs around 55 kg. Diminutive in stature, the 58-year-old Yunmei finds it more and more difficult to hold her daughter up.
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Pan Yunmei and Pan Shufei in the dormitory of Beijing Yansheng Care Center on Feb. 12, 2022
On the rainy night of June 23, 2011, Pan Shufei, who was an eleventh grader back then, did not return home on time. The school bus arrived at the nearby stop at 10:15 every evening. Shufei should have returned home around that time after crossing a road that was about a dozen of meters wide.
However, Yunmei did not get to welcome her daughter home as late as 10:40 that evening. From the balcony, she saw many people gathering around the road with police cars and an ambulance. Yunmei had a premonition that something bad had happened. When she ran downstairs, the ambulance was already gone.
Someone said they saw a car crashing into the curb at a lightning speed before it reversed and fled the scene. A short-haired girl in a white and red school uniform was hit in the accident and was later taken on the ambulance.
Yunmei noticed an umbrella on the road. She recognized that it belonged to Shufei. "No, it was my daughter Shufei!" Yunmei shouted in despair. The police then escorted her to the hospital.
The accident resulted in multiple rib fractures and diffuse intracranial hemorrhage in Shufei. Within 20 minutes upon arriving at the hospital, Yunmei received a critical condition notice. The brainstem injury was too severe. After reading the scans, the doctor advised Yunmei to give up: "What's the point of keeping her alive like this?"
Shufei's father came from his hometown by train. He told Yunmei "not to waste money", and never appeared again after leaving 3,500 yuan.
Yunmei never considered giving up. She transferred Shufei from the hospital in Sanhe to Beijing where Shufei's life was secured after emergency treatment. However, Shufei remained in a coma, and part of her parietal bone had to be removed due to the injury.
Several days later, Shufei opened her eyes but became a vegetative patient with no signs of awareness.
This "vegetative" state lasted for about two years. In 2013, Yunmei noticed that her daughter's eyes were able to focus. She tried to move her finger in front of Shufei, and Shufei's eyes followed the finger as it moved. Yunmei believed that her daughter had entered a "minimally conscious state".
There are two common states of vegetative patients: PVS (persistent vegetative state) and MCS (minimally conscious state). MCS patients are able to understand a speaker's message and make simple responses, such as blinking eyes and holding hands. For a vegetative patient, changing from PVS to MCS is the first step to recovery.
Volunteer Yang Lianjiong told Gallery Online: "She can move her eyeballs only, but you can tell that there are emotions in her now. It's a drastic change." At that time, he also believed that Shufei was getting better. Over the past 11 years, he has been helping the mother and daughter.
In 2014, Shufei was able to swallow. Yunmei had Shufei's nasogastric tube removed and encouraged her to eat orally.
In 2017, Shufei was able to utter a sound. She called for her mother in a "growling" manner and made simple gestures. "She would take off the blanket with her hand when she feels it's too hot."
Everything seemed to be getting better inch by inch until Shufei went into a coma and was admitted to ICU again on Sep. 8, 2021 due to "phlegm stuck in throat". After being released from ICU, she was re-intubated with tracheostomy and nasogastric tubes. The communication and body capability she had regained previously was all lost. "We are back to square one."
Yunmei used to frown upon all the intubation, but she started to accept the cruel reality from then on. "She would die without the tubes."
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Pan Yunmei suctions phlegm from daughter's throat
Mother used to beg on the streets for money to pay medical billsA piece of underpad can be used an extra time after cutting off the dirtied part and putting together the fragments. A syringe can be used for an extra week after sterilizing it with boiling water. Bit by bit, Yunmei can save a few dozen yuan every month in this way.
Behind careful budgeting are the expensive medical bills. To keep a vegetative patient alive, conservative treatment and care cost 100,000 to 200,000 yuan per year. The daily cost of ICU is over 10,000 yuan on average. Shufei was admitted to ICU for the second time in September 2021 and stayed there for two weeks. The cost was more than 200,000 yuan.
Yunmei is not sure how much money she has spent either. "At least one million yuan." The hit-and-run driver was still at large. Yunmei had to pay the medical bills on her own.
11 years ago, Yunmei sold her house in Sanhe to save her daughter's life. After Shufei was transferred to the rehabilitation hospital in Beijing, Yunmei slept in the wheelchair next to Shufei's bed every day to save money. "I used to buy four loafs of steamed breads for one yuan and eat them with some sauce. I stuck to this diet for a few months." Before long, the money she gathered from selling the house and borrowing from friends and relatives was about to run out. The rehabilitation hospital kept sending her payment reminders, and she had to leave with her daughter.
In Beijing, Yunmei had nowhere to go and nobody to turn to. For a time, she begged on the streets for money to pay medical bills. During her begging days, she met several student volunteers from the Renmin University of China. Some media outlets also noticed what the mother and daughter went through. With the help of the volunteers, media, and friends, Yunmei and her daughter eventually had a place to stay.
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Pan Yunmei still keeps the chat history on her phone where the volunteers celebrated Pan Shufei's birthday.
Ever since the car accident, Yunmei has been trying to search for the driver by various methods in Sanhe. With the help of volunteers, she created a Weibo account "Child Wake Up" to find clues on the internet but yielded few results.
Adjacent to Beijing, the three counties, namely Sanhe, Dachang, and Xianghe, are homes to many "Beijing drifters" thanks to convenient commuting and low house prices, relatively speaking.
The car accident took place near the entrance of Xunhewan apartment complex, Xianren Street, Sanhe. It's a bustling street with a variety of stores.
"There are more than twenty surveillance cameras around the street, but they said none of them captured a recognizable shot on the car." Yunmei told Online Gallery: "All I know is that it was a white or gray sedan car with a Beijing license plate."
In 2013, in an attempt to find the hit-and-run driver, Yunmei brought her daughter, who's in a wheelchair, to a television show called King Wang. Many viewers felt for the mother and daughter. Yunmei even received donations from people and organizations after the show. Still, there have been no signs of the driver. From then on, she had focused all her attention on looking after her daughter.
When Shufei was admitted to ICU for the second time in 2021, some volunteers helped Yunmei to raise funds on the internet to cover the medical bills. But Yunmei thought that "consuming people's compassion" is not a permanent solution. "To find the liable driver is the only way."
"A step on the gas ruined our lives completely."Pan Yunmei was born in Changzhou, Jiangsu in 1964. In 1983, Yunmei came to Beijing alone at the age of 19. She worked during the day and studied management, English, and German at a night school.
In the early 90s, she joined the Beijing Service Bureau for Diplomatic Missions as a support staffer and was assigned to the U.S., Canadian, and German embassies successively for 16 years.
In 1992, the 28-year-old Yunmei gave birth to a girl. In the same year, she spent 50,000 yuan buying a three-room department in Sanhe, a county 73 km east of Beijing. "We settled down at the perimeter of Beijing." When Shufei was 3 years old, Yunmei and her husband got divorced. "My ex-husband and his parents wanted a boy." After the divorce, Yunmei rent a house in Beijing, living with her daughter.
"We are a single-parent family, but Shufei never felt inferior to others," Yunmei told Online Gallery that her job involved frequent interactions with foreigners. In Shufei's photo album, there are many childhood pictures taken with foreign kids. "She has been interested in German and French since childhood. And she made a lot of foreign friends."
"She's outstanding in grades. Out of more than 2,000 students, she was ranked the 28th." Yunmei said that her daughter also had more experiences than her peers. "She ate a bucket of Dove chocolate that was worth more than 100 yuan at the time. None of her classmates had such luxury."
At the age of 9, Shufei was transferred to the school in Sanhe, and Yunmei traveled back and forth between Beijing and Sanhe regularly. During workdays, she worked in Beijing and stayed over at a friend's house. After getting off work from the embassy at 3 pm every Friday, Yunmei took an intercity bus back to Sanhe, arriving home at 5 pm. To ease Yunmei's burden, her mother helped look after Shufei in Sanhe.
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Vegetative patients suffer muscle atrophy and bent joints due to a decline in physical function
Yunmei remembers that several days before the accident, Shufei just finished the eleventh-grade exam and submitted an application to the school to discontinue her studies there. As planned, Shufei was going to university in Germany after the eleventh-grade exam, and Yunmei was going to work in Germany as an expatriate staffer.
"That day, she could have skipped school, but she had a hard time parting from her teachers and classmates." It was less than a week before the end of the semester on July 1 when the accident happened.
Yunmei told Online Gallery: "A step on the gas ruined our lives completely." Their plans of studying and working in Germany came to naught after the accident.
Over the past 11 years, the mother and daughter moved 8 times. Some time ago, Yunmei asked a friend to rent an apartment. They signed a one-year contract and paid rent in advance. On the very first day they moved in, the landlord "withdrew the contract on the spot" when he saw the mother and daughter.
On the other hand, Yunmei was aided by many kind-hearted people. In Beijing, she met a landlord who let them live peacefully in his apartment for 5 years rent-free. "Those were my happiest days in Beijing," said Yunmei. This landlord has been helping her ever since.
In May 2020, to further reduce costs, the mother and daughter moved back to Sanhe after living in Beijing for almost ten years. The 9 years Yunmei spent in Sanhe with her mother and daughter before the accident were the happiest years of her life. In spite of everything, it is the closest place to "home" for her. At first, Yunmei planned to live in Sanhe for the rest of her life, but Shumei's worsened condition changed everything. Eventually, they lived in Sanhe for just over a year.
The last time they moved was December 2021. Yunmei brought her daughter to Beijing Yansheng Care Center. The care center is their eighth home.
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In Beijing Yansheng Care Center
"There is no discrimination against vegetative patients here."Founded in 2015, situated 6 km southeast of downtown Miyun, the care center consists of 4 rows of single-story houses, merely hundreds of meters away from Beijing Nanshan Ski Village. One of the few, if not the only, vegetative patient care centers in China, it contains up to 41 vegetative patients at a time.
"Miracles" reportedly occurred from time to time where "a vegetative patient regained consciousness", but Xiang Jiuda, the director of Beijing Yansheng Care Center, had a different opinion. "It's virtually impossible. 165 vegetative patients were admitted to the care center, there has not been one single "miracle" so far."
"Most patients remain vegetative until death," Xiang Jiuda told Online Gallery, "and for that reason, many big hospitals are reluctant to treat vegetative patients."
Xiang Jiuda said that most vegetative patients have no choice but to be sent home, which also causes many problems. It's a challenge for their family members physically, psychologically and financially. Few can cope with the medical care difficulty. "They either don't know how to feed or they don't know how to suction phlegm." According to Xiang Jiuda, vegetative patients sent home can live less than six months on average.
During his days as a neurosurgeon in a hospital in Miyun District, Xiang Jiuda had met many vegetative patients who had nowhere to go after being released from the hospital. In 2015, after selling an apartment and quitting his job, the former neurosurgeon founded Beijing Yansheng Care Center, the first institution in China that provides care services dedicated to vegetative patients.
Xiang Jiuda told Online Gallery: "The vegetative patients care center was founded so that the families of the patients can return to the society and live a normal life." Still, some families are so worried about the patients that they "live" in the care center too. "They spent night after night in a chair or on a foldable bed next to the patient's bed." Xiang Jiuda felt for them and rearranged several apartments for them to use as dormitories.
Xiang Jiuda said that the care center has 41 beds and charges 7,500 yuan per bed per month. New patients will need to wait for a vacancy. He intended to expand to 100 beds in 2022.
There are 25 nurses in total who provide basic care services, such as turning and repositioning the patients, feeding them with food and water, and disposition of phlegm and feces 24 hours a day to extend the patients' lives and "improve the quality of their lives".
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Unable to eat through their mouth, vegetative patients need to be fed through a nasogastric tube
Yunmei spent nearly 40 years in Beijing. Her hometown Changzhou, Jiangsu has long since become a distant memory for her. Yunmei's mother has missed Shufei so much. Even now, she knows nothing about what happened to her granddaughter.
Over the past 11 years, Yunmei visited her hometown only twice. When her mother asked about Shufei, she lied that "the confidentiality of Shufei's job abroad prevented her from contacting families". The other relatives had no choice but to help make the lie plausible. There was one time when the grandmother couldn't be persuaded. Yunmei asked a volunteer girl to pretend to be Shufei and talk to the grandmother on the phone.
When it comes to her mother, Yunmei always feels guilty for she "can't fulfill the responsibilities of a daughter". Her latest WeChat moment includes a short video that celebrates her mother's 99th birthday. Along with the video, she wrote, "I couldn't visit my mother since I need to look after Shufei. All I can do is give my best wishes from afar."
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Pan Yunmei uses a syringe to feed Pan Shufei with water
Yunmei and her daughter live in a 3-room house at the far west end of the care center. There are a desk, a sickbed, and a small sleeper sofa in the bedroom. The middle room is used as the living room as well as the dining room. Two old, unused sofas sit on the side.
The bathroom is not yet connected to the sewer, so the sink and toilet are not usable. In winter, if you open the window, the bathroom becomes a natural icehouse in which Yunmei stores various ingredients since there is no refrigerator in the house.
Yunmei thought that the nurses in the care center can give her a helping hand when a disaster hits. Miyun District is not too far away from downtown Beijing, so it won't take too long if Shufei needs to be sent to a hospital urgently. Most importantly, they can stay there as long as she pays the bills. "There is no discrimination against vegetative patients here."
Sometimes, Yunmei reminisces about the house she rents in Sanhe. All of her and Shufei's belongings are kept there. She grew goldfish plants in two red flowerpots given by a friend. However, considering Shufei's condition, she is not going back there any time soon. "In all likelihood, we are going to spend the rest of our lives in this care center."
She plans to ask someone to bring over their belongings from their home in Sanhe when the pandemic ends. "By then, we will have a refrigerator and kitchenware. With the goldfish plants sitting on the windowsill, this place will be our home."
【English|My Vegetative Daughter and Me | Online Gallery】(This story was first published on TMTPost. Author: Wei Liukun | Video: Wei Liukun | Editor: Chen Zheng)
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